Sometimes real superheroes live in the hearts of small children fighting big battles.
Inspirations of 2016
Brave and vibrant Aidan
Aidan is a vibrant, handsome, hilarious, and ridiculously smart 10 year old boy.
He literally was born fighting for his life and unable to breathe. It was later determined that he had PPHN (persistent Pulmonary hypertension of the newborn) & Hydronephrosis (issues with his kidneys). It was because of this that the fact Aidan failed to have a bowel movement until he was 13 days old went almost completely unnoticed by his medical team. Aidan remained in the NICU for almost 3 weeks. He was diagnosed with Pyloric Stenosis, Cystic Fibrosis, Hirshprungs, GERD and many more but nothing ever really fit all of Aidan's symptoms. He went through several tests, surgeries, & surgical procedures for 3 1/2 years with little to no relief.
Finally in June 2010 his transcending colon was removed. For a year and a half after that he was in an improved state of health but the happiness was short lived, Aidan's health problems again started aggravating.
He literally was born fighting for his life and unable to breathe. It was later determined that he had PPHN (persistent Pulmonary hypertension of the newborn) & Hydronephrosis (issues with his kidneys). It was because of this that the fact Aidan failed to have a bowel movement until he was 13 days old went almost completely unnoticed by his medical team. Aidan remained in the NICU for almost 3 weeks. He was diagnosed with Pyloric Stenosis, Cystic Fibrosis, Hirshprungs, GERD and many more but nothing ever really fit all of Aidan's symptoms. He went through several tests, surgeries, & surgical procedures for 3 1/2 years with little to no relief.
Finally in June 2010 his transcending colon was removed. For a year and a half after that he was in an improved state of health but the happiness was short lived, Aidan's health problems again started aggravating.
Till now Aidan has gone through more than 27 surgeries and has the latest diagnosis of Neuronal intestinal Dysplasia, Chronic Intestinal Pseudo Obstruction, Autism (high functioning) and Elhers Danlos Syndrome.
His mother Amie says - "We are supposed to teach him as his parents but he has taught us so much. So much about strength and the true meaning of love & perfection. He is perfect and brings so much joy and laughter into our lives!"
Even through all of the pain, surgeries, and setbacks you rarely will see him without a smile on his face! He lights up where ever he is with his one of a kind spark, joy & energy. He truly leaves a lasting impression on everyone he meets or even smiles at!
Aidan's message to other children:
"Keep hoping that you can find good doctors that can help you & give you relief. Try to focus on things that make you really happy like your favorite sports, favorite teams, tv shows, music etc. Remember to always do your best, be brave & be you."
Positive thinking siblings - Chloe, Henry and Luke
Chloe is 18 and was born with webbed vocal chords, Asthma, Ehlers Danlos syndrome, Asbergers, Receptive and expressive language disorder and also suffers with nasal polyps. Some days she takes up to 30 tablets and 3 inhalers per day for pain and breathing issues. Chloe is in so much pain some days that she can barely move because of dislocations or stiff muscles but she finds distractions like reading, watching movies or playing with her bunny, dog and kitten.
Choloe's message to other children:
"Always stay positive and don't let your conditions stop you".
Choloe's message to other children:
"Always stay positive and don't let your conditions stop you".
Henry is 12 and has Ehlers Danlos syndrome, Irritable bowel syndrome, many allergies and undiagnosed heart problems. He doesn't take any regular medication but has Movicol for when he is struggling with his ibs and a epipen for emergency use if he has an allergic reaction. Although Henry is in extreme pain a lot of the time, he stays positive about everything and loves dancing & gymnastics!
Henry's message to other children:
"Always smile"
Luke is 11 and was born with Ehlers Danlos syndrome, Epilepsy, Irlen syndrome, Asthma, Tourette syndrome, a hole in his heart and hernias. He has to take Epilim, Salbutamol and sometimes Montelukast to keep his health under control. Luke also has emergency medicine called Buccomadazulam which stops Epileptic seizures. He doesn't let his conditions stop him from enjoying life!
Luke's message to other children:
"Never let anything slow you down".
Carly Rose - The courageous, ever smiling sixth grader
Like all mothers Lisa Marie K was expecting a full term, healthy baby during November 2004 but she was shocked when she saw her daughter Carly Rose who was a small, "blue" baby not moving or crying. Due to her respiratory distress, she was quickly taken to NICU and in the hours and days to follow Lisa and her family found out sad truths - Carly was several weeks premature and had under-developed lungs and digestive system. Additionally, she had a severe case of Hemolytic Anemia and very poor liver function from day 1. After ten days in NICU, they found out that Carly Rose also had serious heart defects and likely had a stroke during the delivery or time shortly after while being resuscitated. She is now 12 years old and still struggles with CHD (even though she's had corrective surgical repairs), liver/GI issues, cognitive impairments and mild to moderate intellectual delays (permanent brain damage in some areas but great function in others), developmental dyspraxia (also known as Developmental Coordination Disorder), respiratory issues (related to her Pulmonary Valve Stenosis primarily) and more.
She was recently diagnosed with a progressive disease called Congenital Myasthenia Gravis which affects her various organs. In the meantime, Carly Rose works with OT, PT and stays active with sports to keep her fine and gross motor skills at the best they can be.
Despite many challenges Carly Rose is a vibrant tween who is generous, caring and loves to help others. She participates in a youth philanthropy group to raise money for the hospital where she is a patient. Carly Rose is active with choir, running club and various sports whenever her health permits. She participated in two Special Olympics programs. She enjoys gymnastics.
Carly Rose's message to other children:
"Keep smiling under all circumstances"
Gavin - A brave teenager
Frankie was happy and healthy when she was expecting Gavin. She was excited and wanted to finish all her pending work before the due date but Gavin decided to arrive early. He was born six weeks premature with two congenital heart defects, four blood disorders and Down Syndrome (a genetic disorder causing growth delay and learning difficulty). Frankie was shocked to know about the various health problems of her son but she kept her spirits high and imbibed the same qualities into her son who boldly faces all his challenges.
Frankie was happy and healthy when she was expecting Gavin. She was excited and wanted to finish all her pending work before the due date but Gavin decided to arrive early. He was born six weeks premature with two congenital heart defects, four blood disorders and Down Syndrome (a genetic disorder causing growth delay and learning difficulty). Frankie was shocked to know about the various health problems of her son but she kept her spirits high and imbibed the same qualities into her son who boldly faces all his challenges.
In the last few years Gavin has been diagnosed with several medical conditions. He has recently been diagnosed with ALL (Acute Lymphoblastic Leukemia) which came as a big blow to the whole family. In spite of all these challenges seventh grader Gavin always has a smile on his face. Even during his hospital visits or inpatient stay he spreads cheer to his fellow patients. He is a true inspiration to all. He loves going to school, play baseball, watch movies and attend Hip Hop dance classes . He even helps his mommy with cooking.
Gavin’s message to other children:
Be happy and don’t worry... be strong and brave it will be okay.
Jaya - A courageous tween
Kristi was extremely happy when she conceived for the third time but during her 18 week ultrasound she was told that the baby had spina bifida ( a type of birth defect which is caused when when the bones of the spine (vertebrae) don't form properly around part of the baby's spinal cord). She heard the worst thing any mom would like to hear. She was told that the baby would probably never sit unassisted, would never walk, possibly have mental retardation, and that was only if he survived the pregnancy. Although Kristi was shocked to hear this but she remained positive throughout her pregnancy.
A sweet little baby boy arrived at the expected time. He was born not only with spina bifida but also with chiari 1 malformation (structural defect of the brain ) as well as hydrocephalus (a condition that occurs when fluid builds up in the skull and causes the brain to swell) . His parents named him Jaya. When Jaya was about 2 months old his parents were told that he had sacral agenesis, meaning his spine completely stopped from the L2 vertebra. At 3 months Jaya had his first shunt malfunction, and almost didn't survive the surgery. His brain hemorrhaged when they removed the shunt catheter from his brain. He lost a lot of blood. He had to undergo 6 brain surgeries.
A sweet little baby boy arrived at the expected time. He was born not only with spina bifida but also with chiari 1 malformation (structural defect of the brain ) as well as hydrocephalus (a condition that occurs when fluid builds up in the skull and causes the brain to swell) . His parents named him Jaya. When Jaya was about 2 months old his parents were told that he had sacral agenesis, meaning his spine completely stopped from the L2 vertebra. At 3 months Jaya had his first shunt malfunction, and almost didn't survive the surgery. His brain hemorrhaged when they removed the shunt catheter from his brain. He lost a lot of blood. He had to undergo 6 brain surgeries.
When he was 4 yrs old, he was diagnosed with eosinophilic esophagitis, neurogenic bladder/bowel and had a bowel surgery which ruptured a few days later, again leaving him in critical condition as he fought high fevers from the infection. When he was 7, he had a surgery to remove his legs at the knees and use the bones to stabilize his spine. This was a very difficult decision for his mom, but she felt this would benefit him and give him more independence. He did amazing, after a few complications, and has never looked back.
In Arabic, Jaya means "victory & overcomer", and he has surely lived this! He loves sports and actively participates in basketball. He is a bright, intelligent, friendly and affectionate tween. He loves to show magic to kids and make them happy right from his childhood. He inspires his friends and family.
Jaya’s Message to other children:
Just do what you want to do, even if you have to do it differently. Stay positive and keep trying. Never give up!
Jaya’s Message to other children:
Just do what you want to do, even if you have to do it differently. Stay positive and keep trying. Never give up!
Toby - An intelligent and kind 8 year old
An outdoor loving, bright and intelligent boy Toby is a real trooper. His trek began on 7th December 2013 when an orthopedic doctor drew blood from him. His parents received a call in the evening asking them to take Toby to Nationwide Children’s Hospital, Ohio and meet an oncologist. The oncologist redid the blood work and gave the shocking news that Toby had leukemia (blood cancer). Stephen (Toby’s father) dropped to the floor and Tabatha’s (Toby’s mother) heart almost stopped but she tried to remain calm.
Toby innocently asked the doctor – “Am I going to die?” He spent the next 14 days in the hospital cancer ward receiving chemo treatments, bone marrow biopsies, port implant surgery, spinal chemos and multiple blood product infusions. Soon after being released, he was readmitted for an extensive outbreak of mouth, throat and upper GI blisters, a small road bump in his journey.
Ever since then Toby has to visit the hospital which is about 3 hours from his residence on a regular basis for chemo therapy. He has to take oral chemo and steroids at home and bear all the horrible side effects of the medicines.
An outdoor loving, bright and intelligent boy Toby is a real trooper. His trek began on 7th December 2013 when an orthopedic doctor drew blood from him. His parents received a call in the evening asking them to take Toby to Nationwide Children’s Hospital, Ohio and meet an oncologist. The oncologist redid the blood work and gave the shocking news that Toby had leukemia (blood cancer). Stephen (Toby’s father) dropped to the floor and Tabatha’s (Toby’s mother) heart almost stopped but she tried to remain calm.
Toby innocently asked the doctor – “Am I going to die?” He spent the next 14 days in the hospital cancer ward receiving chemo treatments, bone marrow biopsies, port implant surgery, spinal chemos and multiple blood product infusions. Soon after being released, he was readmitted for an extensive outbreak of mouth, throat and upper GI blisters, a small road bump in his journey.
Ever since then Toby has to visit the hospital which is about 3 hours from his residence on a regular basis for chemo therapy. He has to take oral chemo and steroids at home and bear all the horrible side effects of the medicines.
Although at times Toby gets depressed but soon he overcomes it and sends letters, cards and gifts to other sick children to lift up their spirits. He has a heart of gold. On his 7th birthday he didn't want any birthday gifts but only requested the guests to bring a donation for his local humane society! He ended up with a truck load of donations!
In school, Toby has made the principal’s roll almost every semester although he is faced with many challenges from his treatment and has to miss school for medical reasons.
In school, Toby has made the principal’s roll almost every semester although he is faced with many challenges from his treatment and has to miss school for medical reasons.
In 2014 he was the junior grand marshall for the local relay for life.
Message to other children:
Keep fighting. Never ever give up and look at the good things instead of the bad!
Inspiration for the month of December '2015( Ellen - A strong and kind tween)
A pretty, kind and affectionate tween Ellen has been struggling with debilitating health issues her entire life. At the time of birth, she suffered from a Bilateral Pneumothorax (collection of air between the lung and the chest wall on both sides resulting in the collapse of the lung) and was transported to a NICU in Green Bay, Wisconsin, for seven days. At the age of three, she was diagnosed with Chronic Pseudo Intestinal Obstruction. During the procedure to place her permanent Cecostomy (a tube placed by a surgeon into the intestine from outside of the belly), Ellen's intestine perforated multiple times.
After 10 long years of medical procedures, surgeries and hospitalizations, Ellen is diagnosed with Hypermobility Ehlers Danlos Syndrome (HEDS) with a vascular cross, Dysautanomia, Sleep Disorder, POTS, Chronic Fatigue Syndrome, Anxiety Disorder, Mitochondrial Disorder and ADHD. She has spent much of her time managing chronic ear infections, unexplained sore throats and fevers, hearing loss, speech and language issues, stomach pain, lethargy, muscle weakness with pain, chronic fatigue, dizziness and most recently, benign lesions.
In the past several years Ellen's health has declined considerably. She has begun wearing braces on her knees and has to use a wheel chair for extreme weakness.
Her education has been severely compromised due to the unpredictability of her illness. She has been placed in Special Education with OHI (Other Health Impairment) and has an IEP plan in place. She is a brave and courageous girl. Inspite of all odds she currently attends two ~ half days of school per week which is a great achievement with her health state.
Ellen loves her siblings and fondly cooks and bakes cake on their birthdays. She loves to read the Warrior series. She is an animal lover and has a great knowledge about dolphins, mermaids etc. She takes keen interest in art projects and beading whenever her health permits. She is an inspiration to her friends and family.
After 10 long years of medical procedures, surgeries and hospitalizations, Ellen is diagnosed with Hypermobility Ehlers Danlos Syndrome (HEDS) with a vascular cross, Dysautanomia, Sleep Disorder, POTS, Chronic Fatigue Syndrome, Anxiety Disorder, Mitochondrial Disorder and ADHD. She has spent much of her time managing chronic ear infections, unexplained sore throats and fevers, hearing loss, speech and language issues, stomach pain, lethargy, muscle weakness with pain, chronic fatigue, dizziness and most recently, benign lesions.
In the past several years Ellen's health has declined considerably. She has begun wearing braces on her knees and has to use a wheel chair for extreme weakness.
Her education has been severely compromised due to the unpredictability of her illness. She has been placed in Special Education with OHI (Other Health Impairment) and has an IEP plan in place. She is a brave and courageous girl. Inspite of all odds she currently attends two ~ half days of school per week which is a great achievement with her health state.
Ellen loves her siblings and fondly cooks and bakes cake on their birthdays. She loves to read the Warrior series. She is an animal lover and has a great knowledge about dolphins, mermaids etc. She takes keen interest in art projects and beading whenever her health permits. She is an inspiration to her friends and family.
Ellen loves her siblings and fondly cooks and bakes cake on their birthdays. She loves to read the Warrior series. She is an animal lover and has a great knowledge about dolphins, mermaids etc. She takes keen interest in art projects and beading whenever her health permits. She is an inspiration to her friends and family.
Ellen’s Achievements:
Ellen’s Achievements:
- Beads Of Courage Long Distance Program for the Chronically ill ~ 2014.
- Nominated for a Special Spaces of Green Bay Bedroom Make Over by Children's Hospital of Wisonsin Milwaukee in 2015.
- Bike Bald ~ Invited to the Naperville Marathon and weekend in Chicago in November 2015.
- Icing Smiles Inc. Wish Cake 2015/16
Message to other children:
Be proud of who you are at this very moment. Being the best YOU can be is "enough".
Be proud of who you are at this very moment. Being the best YOU can be is "enough".
Inspiration for the month of November (Niharika - A creative and affectionate child at heart)
The Businesswoman in Our House
By Renuka Menon
By Renuka Menon
The Economic Times in India, makes for breathless reading every morning. It produces reams of newsprint on how the citizens of Bangalore (now being called the “Start-up City”), are sailing off on life’s ocean in their individual sailboats and not on community ferries. And some of the sailors seem to be just about old enough to hold driving licenses!
So, it should come as no surprise that one fine morning, it struck me that our 20 year old daughter should also join this brigade of brave adventurers. What may come as a surprise is that Niharika is not your regular young adult chasing a dream and funding – she is, what is generically and politically correctly called “differently abled”. In her 20 year old body, she has the mind of a particularly innocent 10 year old, the motor skills of an arthritic 70 year old, the temper of a bull on rampage and the heart of an angel.
Niharika has spent her life not wanting to do most of the things we, her parents wanted her to do – and she has not been silent about it; So for the many years we tried to fit her into one special school or the other, our days would start with loudly expressed protests, accompanied by tears on her part and vociferous and increasingly irritated counter protests on my part, all culminating in a stressed, angry and exhausted mother-daughter duo.
So, it should come as no surprise that one fine morning, it struck me that our 20 year old daughter should also join this brigade of brave adventurers. What may come as a surprise is that Niharika is not your regular young adult chasing a dream and funding – she is, what is generically and politically correctly called “differently abled”. In her 20 year old body, she has the mind of a particularly innocent 10 year old, the motor skills of an arthritic 70 year old, the temper of a bull on rampage and the heart of an angel.
Niharika has spent her life not wanting to do most of the things we, her parents wanted her to do – and she has not been silent about it; So for the many years we tried to fit her into one special school or the other, our days would start with loudly expressed protests, accompanied by tears on her part and vociferous and increasingly irritated counter protests on my part, all culminating in a stressed, angry and exhausted mother-daughter duo.
We went through many, many speech therapists, occupational therapists, special educators, doctors, neurologists, genetic evaluators, 4 schools and 1 vocational center and in no time at all, 20 years went by. Niharika continued to fight every attempt to educate her, settle her down into institutions, mould her into peer groups and generally give her a life like everyone else’s. And after a point, this whole struggle lost its point.
Then, came one of those moments in life, when frenzied thoughts give way to calmer reflections and the right answers pop up in your mind, lit up in neon!
Rather than being at any other place, however nice, Niharika was happiest at home. So - why push her into going out of her comfort zone? - was a thought. Quickly followed by - and why not try to get her to feel useful and productive right here, in her home? From there, it was a just a step to zooming in on what she could do and getting our cottage industry in motion.
Then, came one of those moments in life, when frenzied thoughts give way to calmer reflections and the right answers pop up in your mind, lit up in neon!
Rather than being at any other place, however nice, Niharika was happiest at home. So - why push her into going out of her comfort zone? - was a thought. Quickly followed by - and why not try to get her to feel useful and productive right here, in her home? From there, it was a just a step to zooming in on what she could do and getting our cottage industry in motion.
Niharika, with the help of her teacher and friend Bhumika, does block printing. They block print designs on gift bags, envelopes and wrapping paper in vibrant colours and sell these under the banner “Special World”. Friends and family love her work and support her enthusiastically. And slowly, we hope that word will spread and Special World products will be there in many hands.
Niharika has come a long way – from a scared, confused child to a confident, self willed young adult; she is articulate about her likes and dislikes, uninhibited in her dealings with others, whole hearted in her enjoyment of life and on the whole, a self contained soul. Her favourite song, introduced to her 2 year old self by a favourite uncle is Steppenwolf’s “Born to be Wild” – make it “Born to be Wild and Free” and this should probably be the theme song of her life
We, her parents, have also travelled a long way with her. It took us a while to stop pushing her into the world around and to start letting her create her own world. And yes, it’s a wonderful world!
Niharika has come a long way – from a scared, confused child to a confident, self willed young adult; she is articulate about her likes and dislikes, uninhibited in her dealings with others, whole hearted in her enjoyment of life and on the whole, a self contained soul. Her favourite song, introduced to her 2 year old self by a favourite uncle is Steppenwolf’s “Born to be Wild” – make it “Born to be Wild and Free” and this should probably be the theme song of her life
We, her parents, have also travelled a long way with her. It took us a while to stop pushing her into the world around and to start letting her create her own world. And yes, it’s a wonderful world!
Niharika's Message to Other Children:
Do what you love to do and enjoy life always.
Do what you love to do and enjoy life always.
Inspiration for the month of October (Alexa - A brave and affectionate tween)
Dante and Monica Reyes were blessed with a sweet and happy baby girl on 13th February 2003. They named her Alexa and affectionately called her Princess Lexy.
At 2 months Alexa was diagnosed with NF-1(A brain tumor). At 14 months she stopped learning to walk. Her left leg was dragging behind and her left hand clenched tightly against her little chest. Her parents immediately took her to the pediatrician. He scheduled an emergency MRI after performing some test on her foot. The result of the MRI changed their lives forever. Sweet little princess Lexy had BRAIN CANCER complicated by NF-1 which paralyzed her left side.
At 2 months Alexa was diagnosed with NF-1(A brain tumor). At 14 months she stopped learning to walk. Her left leg was dragging behind and her left hand clenched tightly against her little chest. Her parents immediately took her to the pediatrician. He scheduled an emergency MRI after performing some test on her foot. The result of the MRI changed their lives forever. Sweet little princess Lexy had BRAIN CANCER complicated by NF-1 which paralyzed her left side.
Despite the setback, Alexa learned to walk due to her parents’ and brother Cameron’s constant encouragement, support and unconditional love.
Alexa is now a seventh grader. She has been bravely fighting cancer for more than a decade. She has been through more in her 12 years than what many go through their entire life. She has endured 10 brain surgeries, 5 of them de-bulking surgeries, a brain external ventricular drain, an Endoscopic Third Ventriculostomy, a brain shunt, a G-tube and an NG tube, a Mickey button, 3 ports, chemotherapy since she was 14 months old, pneumonia, a hole in her lung, seizures, and a surgery which rendered her totally blind. Her last surgery also created many permanent endocrine issues. In addition, Lexy has endured thousands of port sticks, MRI's, CT scans, ultrasounds, angiogram, EKG tests, and months and months of ER and hospital inpatient stays.
Alexa’s last surgery has unfortunately left her blind. This did not make her depressed; instead she took it as a learning opportunity and has learned Braille to read and Abacus to do Math. She is a beautiful Warrior Princess in true sense. She never gives up even during her pain. She is brave, affectionate, caring, empathetic and helpful. She loves dolls, Princesses, hair bows and jewelry. She enjoys music and loves to sing along with her grandma.
Alexa is now a seventh grader. She has been bravely fighting cancer for more than a decade. She has been through more in her 12 years than what many go through their entire life. She has endured 10 brain surgeries, 5 of them de-bulking surgeries, a brain external ventricular drain, an Endoscopic Third Ventriculostomy, a brain shunt, a G-tube and an NG tube, a Mickey button, 3 ports, chemotherapy since she was 14 months old, pneumonia, a hole in her lung, seizures, and a surgery which rendered her totally blind. Her last surgery also created many permanent endocrine issues. In addition, Lexy has endured thousands of port sticks, MRI's, CT scans, ultrasounds, angiogram, EKG tests, and months and months of ER and hospital inpatient stays.
Alexa’s last surgery has unfortunately left her blind. This did not make her depressed; instead she took it as a learning opportunity and has learned Braille to read and Abacus to do Math. She is a beautiful Warrior Princess in true sense. She never gives up even during her pain. She is brave, affectionate, caring, empathetic and helpful. She loves dolls, Princesses, hair bows and jewelry. She enjoys music and loves to sing along with her grandma.
Alexa is the Crew Chief Ambassador for the foundation "Thumbs Up For A Cure" Racing Team. She has the most amazing team - MRL Motorsports. They changed their team name for good from M&R Motorsports to include Lexy MRL Motorsports. She has had an amazing experience with them.
She gets through her journey with faith and her belief that God will heal her; it just might take a little time.
She gets through her journey with faith and her belief that God will heal her; it just might take a little time.
Message to other children:
“I want to tell other kids to NEGU (Never Ever Give Up). You can always find something to smile about. Find something you love to do and DO IT! Smile and keep your faith. Do not think about what you Can’t do, show everybody what you Can. Love and prayers to all children fighting to live like other kids.”
“I want to tell other kids to NEGU (Never Ever Give Up). You can always find something to smile about. Find something you love to do and DO IT! Smile and keep your faith. Do not think about what you Can’t do, show everybody what you Can. Love and prayers to all children fighting to live like other kids.”
Inspiration for the month of September (Ryan - A teenager with incredible mental strength)
Mike and Amy were blessed with a sweet little boy in 1998. They named him Ryan. Ryan was a happy, healthy child and reached all the developmental milestones till March 2001. Since April he started complaining of headaches and felt nauseous. His parents immediately took him to the doctor. After a series of tests he was diagnosed with an inoperable brain tumor on May 5, 2001. His family was devastated. He was only 3 years old at that time.
Over the next 4 years Ryan boldly endured over 14 months of chemotherapy and 6 weeks of radiation therapy. A major part of his childhood years were spent in the hospital. His parents consulted several doctors desperate to find help for their son but all the doctors said the same thing –“Ryan would not survive the surgery” until they met Dr.Levy at Rady Children’s Hospital, San Diego. Ryan’s immense courage, faith, his family and friend’s prayers and Dr.Levy’s expertise proved that Miracles still do happen. Ryan’s inoperable brain tumor was removed completely on June 14th 2005. Ryan healed gradually and started leading a normal life except for the few ups and downs.
Mike and Amy were blessed with a sweet little boy in 1998. They named him Ryan. Ryan was a happy, healthy child and reached all the developmental milestones till March 2001. Since April he started complaining of headaches and felt nauseous. His parents immediately took him to the doctor. After a series of tests he was diagnosed with an inoperable brain tumor on May 5, 2001. His family was devastated. He was only 3 years old at that time.
Over the next 4 years Ryan boldly endured over 14 months of chemotherapy and 6 weeks of radiation therapy. A major part of his childhood years were spent in the hospital. His parents consulted several doctors desperate to find help for their son but all the doctors said the same thing –“Ryan would not survive the surgery” until they met Dr.Levy at Rady Children’s Hospital, San Diego. Ryan’s immense courage, faith, his family and friend’s prayers and Dr.Levy’s expertise proved that Miracles still do happen. Ryan’s inoperable brain tumor was removed completely on June 14th 2005. Ryan healed gradually and started leading a normal life except for the few ups and downs.
However, towards the end of January 2015 Ryan was diagnosed with a rare blood disorder MDS which led to his failing bone marrow. The search began for a bone marrow donor. Ryan’s younger sister Bailey was a perfect match. She loves her brother so much that she did not think twice to be a donor and donated her bone marrow on 23rd April 2015.
Ever since the bone marrow transplant Ryan had to be in and out of the hospital many times. All these harshness of life has not made Ryan weak. In fact, he has become stronger and an inspiration to everyone who knows him. His incredible mental strength, positive attitude, determination, love, kindness and compassion are the cobblestones of the path to his recovery.
Message to other children:
Be kind to all and remain positive under all circumstances. Positive thoughts help you to heal.
Ever since the bone marrow transplant Ryan had to be in and out of the hospital many times. All these harshness of life has not made Ryan weak. In fact, he has become stronger and an inspiration to everyone who knows him. His incredible mental strength, positive attitude, determination, love, kindness and compassion are the cobblestones of the path to his recovery.
Message to other children:
Be kind to all and remain positive under all circumstances. Positive thoughts help you to heal.
Inspiration for the month of August (Hamdi Ahmed)
Hamdi Ahmed, a pretty baby girl was born in Mogadishu, Somalia. Soon her parents found out that she was not able to reach the developmental milestones. When she was about two years old her mother moved to Kuwait along with her for her medical consultation and treatment.
During their six months stay in Kuwait , Fadumo(Hamdi’s mother) found out that Hamdi had a medical condition known as Cerebral Palsy. It is caused by damage to one or more specific areas of the brain, usually occurring during fetal development. Hamdi suffered all the primary effects of cerebral palsy like impairment of muscle tone, gross and fine motor functions, balance, control, coordination, reflexes and posture. She also suffered from the oral motor dysfunction, such as speech impairment and poor facial muscle tone. Along with her physical problems she had to undergo a lot of mental pressure and emotional adjustments. She lost her beloved father at the age of two and a half, she could not return to her homeland Somalia due to a war and staying in Kuwait became difficult due to changing political situation. At the age of three she went to stay with her sister who was then 18 at Cairo, Egypt. After a couple of months they along with their mother and other siblings moved to Syria.
At the age of seven they immigrated to Netherland. Initially they had to stay in a refugee camp. In 2001, they moved to Canada.
During their six months stay in Kuwait , Fadumo(Hamdi’s mother) found out that Hamdi had a medical condition known as Cerebral Palsy. It is caused by damage to one or more specific areas of the brain, usually occurring during fetal development. Hamdi suffered all the primary effects of cerebral palsy like impairment of muscle tone, gross and fine motor functions, balance, control, coordination, reflexes and posture. She also suffered from the oral motor dysfunction, such as speech impairment and poor facial muscle tone. Along with her physical problems she had to undergo a lot of mental pressure and emotional adjustments. She lost her beloved father at the age of two and a half, she could not return to her homeland Somalia due to a war and staying in Kuwait became difficult due to changing political situation. At the age of three she went to stay with her sister who was then 18 at Cairo, Egypt. After a couple of months they along with their mother and other siblings moved to Syria.
At the age of seven they immigrated to Netherland. Initially they had to stay in a refugee camp. In 2001, they moved to Canada.
All this turmoil of life did not make Hamdi depressed or defeated. She did not give up. Although she has to use power chair for movement and Dynavox to talk but she kept her sprits high and participated in wheelchair hockey and won trophies in consecutive years.
1st Trophy: CEWHA (Canadian Electric Wheelchair Hockey Association) 2005 – 2006 Junior Blooview Cup Championship Winner – Baers
2nd Trophy: CEWHA (Canadian Electric Wheelchair Hockey Association) 2005 – 2006 Junior Division, Most Improved Player
3rd Trophy: Toronto Power Wheelchair 2006-2007 Best Goaltender
4th Trophy: TPWL (Toronto Power Wheelchair Hockey League) 2006 – 2007 Paul Michael Championship Winner
1st Trophy: CEWHA (Canadian Electric Wheelchair Hockey Association) 2005 – 2006 Junior Blooview Cup Championship Winner – Baers
2nd Trophy: CEWHA (Canadian Electric Wheelchair Hockey Association) 2005 – 2006 Junior Division, Most Improved Player
3rd Trophy: Toronto Power Wheelchair 2006-2007 Best Goaltender
4th Trophy: TPWL (Toronto Power Wheelchair Hockey League) 2006 – 2007 Paul Michael Championship Winner
Her motto in life is “Be positive, be accepting and be kind.” Now in her twenties she is studying Foundation Degree in Retail Management in Leicester, Great Britain.
She has started a program called “Somali Unlimited Possibilities” to serve the Somali youth and adults with disabilities. This allows people with disabilities to make new friends and acquire new skills through activities like art and craft.
Message to children:
My message to children is to persevere in life. Be determined in what you do. People will try to put you down don’t ever listen to them. You can accomplish anything by setting a goal for yourself. As I always say be positive, be accepting and be kind.
She has started a program called “Somali Unlimited Possibilities” to serve the Somali youth and adults with disabilities. This allows people with disabilities to make new friends and acquire new skills through activities like art and craft.
Message to children:
My message to children is to persevere in life. Be determined in what you do. People will try to put you down don’t ever listen to them. You can accomplish anything by setting a goal for yourself. As I always say be positive, be accepting and be kind.
Inspiration for the month of July (Amazing Isaiah)
Awesome and beautiful baby Isaiah has been sick since he was one week old. He spent most of the first two years of his life in a Children’s Hospital.
Isaiah’s body does not produce leukocytes ( white blood cells) which are the cells of the immune system. He has to get an infusion every three weeks through a port in his chest. Due to weakened immune system he is prone to infections and gets sick frequently. He has several other medical conditions like autism, epilepsy, asthma and genetic disorder. He has several sensory issues. Due to the various health problems and the side effects of all the medicines which he has to take regularly he has developed insomnia (a sleep disorder that is characterized by difficulty falling and/or staying asleep). He has to struggle on a daily basis even with small tasks.
Awesome and beautiful baby Isaiah has been sick since he was one week old. He spent most of the first two years of his life in a Children’s Hospital.
Isaiah’s body does not produce leukocytes ( white blood cells) which are the cells of the immune system. He has to get an infusion every three weeks through a port in his chest. Due to weakened immune system he is prone to infections and gets sick frequently. He has several other medical conditions like autism, epilepsy, asthma and genetic disorder. He has several sensory issues. Due to the various health problems and the side effects of all the medicines which he has to take regularly he has developed insomnia (a sleep disorder that is characterized by difficulty falling and/or staying asleep). He has to struggle on a daily basis even with small tasks.
Isaiah is now 10 years old. The momentous struggle in his everyday life has not deterred him an inch. On the contrary he has shown immense strength and increased optimism in everything he does. Throughout all his ordeals his happiness comes to the fore.
Alicia (Isaiah’s mother) says – “Isaiah is my super hero.
He is sometimes stronger than I. Being a single mom I have to struggle a lot but when I look at his smile my struggle melts away and gives me extra strength.” Due to his amazing strength he was featured in the 2014 calendar of Autism Speaks (Autism Speaks is an autism advocacy organization in the United States that sponsors autism research and conducts awareness and outreach activities aimed at families, governments and the public.
Alicia (Isaiah’s mother) says – “Isaiah is my super hero.
He is sometimes stronger than I. Being a single mom I have to struggle a lot but when I look at his smile my struggle melts away and gives me extra strength.” Due to his amazing strength he was featured in the 2014 calendar of Autism Speaks (Autism Speaks is an autism advocacy organization in the United States that sponsors autism research and conducts awareness and outreach activities aimed at families, governments and the public.
Sweet Isaiah is lovingly called Zadder by his uncle. Zadder is an excellent baby sitter. He says – “Babies are not just cute, they are beautiful and the purest form of life.”
Message to other children:
"No matter what disease you have and how sick you are always love your friends and family. Love like my mommy loves me.”
Message to other children:
"No matter what disease you have and how sick you are always love your friends and family. Love like my mommy loves me.”
Inspiration for the month of June (Nicole Pfister)
Teenager Nicole Pfister was a very healthy lively girl living in Laredo, Texas. On a Monday morning in 2014 she woke up and said she felt sick and asked her mom if she could take a leave from school. She had fever so her mother allowed her to take rest at home. The same thing happened the next day. On the third day she fainted. She was rushed to the hospital and within 24 hours she was diagnosed with very high risk pre B Acute Lymphoblastic Leukemia (a rare form of cancer) with a 50% survival chance.
Chemo Therapy was started immediately. Nicole suffered almost all the side effects of chemo – nausea, vomiting, horrible pain, loss of hair etc. Time passed and Nicole kept getting worse. Day after day, night after night she threw up almost every hour for several months. She was put on feeding tubes and her weight reduced from 100 pounds to 69 pounds.
In Nicole’s words – “I cried every night and day, one day I begged my mother to stop, I told her I gave up, to please stop the pain. I told GOD I was done.
Then one day I didn't throw up, nor the next or the next. I started being fed Jello (gelatin), then made my way to ice cream, hunger was coming back. With physical therapy I started to move my legs again and the ugly deep purple bruise which had taken over my lower body slowly began to fade. I started walking again, things were beginning to look up for me.”
Nicole’s better health did not last long. In October 2014, she had a stroke which partially paralyzed her one side of the body. She had to be in the hospital for two months. Claire (Nicole’s mom) said – “I thought I was going to loose her in the ICU.”
Nicole’s tremendous mental strength, positive attitude, heart warming smile, kindness, love and the medical treatment has made the impossible possible. Since January she is on remission but has to go for a maintenance chemo every week.
The entire struggle has made her fearless, bold and a warrior. She has become livelier than ever! In spite of all the struggle Nicole scores good grades in all the subjects in her home school program. She inspires everyone she meets. She has been featured in “Laredo Morning Times” newspaper, participated in a radiothon for Children’s hospital, San Antonio, Texas and interviewed by Fox 29 (San Antonio News Channel).
Teenager Nicole Pfister was a very healthy lively girl living in Laredo, Texas. On a Monday morning in 2014 she woke up and said she felt sick and asked her mom if she could take a leave from school. She had fever so her mother allowed her to take rest at home. The same thing happened the next day. On the third day she fainted. She was rushed to the hospital and within 24 hours she was diagnosed with very high risk pre B Acute Lymphoblastic Leukemia (a rare form of cancer) with a 50% survival chance.
Chemo Therapy was started immediately. Nicole suffered almost all the side effects of chemo – nausea, vomiting, horrible pain, loss of hair etc. Time passed and Nicole kept getting worse. Day after day, night after night she threw up almost every hour for several months. She was put on feeding tubes and her weight reduced from 100 pounds to 69 pounds.
In Nicole’s words – “I cried every night and day, one day I begged my mother to stop, I told her I gave up, to please stop the pain. I told GOD I was done.
Then one day I didn't throw up, nor the next or the next. I started being fed Jello (gelatin), then made my way to ice cream, hunger was coming back. With physical therapy I started to move my legs again and the ugly deep purple bruise which had taken over my lower body slowly began to fade. I started walking again, things were beginning to look up for me.”
Nicole’s better health did not last long. In October 2014, she had a stroke which partially paralyzed her one side of the body. She had to be in the hospital for two months. Claire (Nicole’s mom) said – “I thought I was going to loose her in the ICU.”
Nicole’s tremendous mental strength, positive attitude, heart warming smile, kindness, love and the medical treatment has made the impossible possible. Since January she is on remission but has to go for a maintenance chemo every week.
The entire struggle has made her fearless, bold and a warrior. She has become livelier than ever! In spite of all the struggle Nicole scores good grades in all the subjects in her home school program. She inspires everyone she meets. She has been featured in “Laredo Morning Times” newspaper, participated in a radiothon for Children’s hospital, San Antonio, Texas and interviewed by Fox 29 (San Antonio News Channel).
Apart from the media coverage she has won the title of “Miss Laredo Teens” in Texas Belleza Latina Pageant show in March 2015 and the Ferrari Kids gala award in May. She was a keynote speaker at “Lights out for Leukemia”, Texas in April 2015 for which she won a honor plaque.
She is not only the idol for her three brothers Memphis, Dustin and Ryan but for her entire family as well as every adult and child she meets. She is beautiful inside out and wise beyond her years.
Message to other children:
"Most people tell you to stay strong. I say take each day as it comes. Wake up happy even though you are in pain. Tell everyone you love them. Play games. The more positive you are the faster your journey passes. Thus being strong happens. "
She is not only the idol for her three brothers Memphis, Dustin and Ryan but for her entire family as well as every adult and child she meets. She is beautiful inside out and wise beyond her years.
Message to other children:
"Most people tell you to stay strong. I say take each day as it comes. Wake up happy even though you are in pain. Tell everyone you love them. Play games. The more positive you are the faster your journey passes. Thus being strong happens. "
Inspiration for the month of May (The non verbal autistic artist - Candy Waters)
Robert and Sandy Waters of Chicago, Illinois (USA) were blessed with a beautiful girl on September 8th, 2000. They named her Candace and lovingly called her Candy. She reached all her developmental milestones till she was two and a half years old. “She was pointing and talking but then she lost everything gradually,” Waters explain. By 3 Candy’s verbal skill and motor skill started regressing and she was diagnosed with autism. Robert and Sandy- Candy’s parents were devastated.
One day when Candy was 6, a teacher sent her home with some art material and asked her parents if she could paint a picture for a fundraiser for an autism school. Robert (Candy’s father) replied – “I don’t think she can.” To her parent’s utter surprise Candy regained her motor skills by picking up a paint brush and completing a beautiful painting. Robert and Sandy took this as an opportunity and kept encouraging her to paint. Painting has been very therapeutic for Candy. It has improved a lot of her motor skills. Along with painting Candy’s parents also introduced music for her therapy. They sang “Mr.Sun” to her right from her toddler age. Sandy (Candy’s mother) says – “Music is a must for autism. When words fail, music speaks.” Robert and Sandy wrote a beautiful song titled “Faith, Hope and Love” which has received national attention.
One day when Candy was 6, a teacher sent her home with some art material and asked her parents if she could paint a picture for a fundraiser for an autism school. Robert (Candy’s father) replied – “I don’t think she can.” To her parent’s utter surprise Candy regained her motor skills by picking up a paint brush and completing a beautiful painting. Robert and Sandy took this as an opportunity and kept encouraging her to paint. Painting has been very therapeutic for Candy. It has improved a lot of her motor skills. Along with painting Candy’s parents also introduced music for her therapy. They sang “Mr.Sun” to her right from her toddler age. Sandy (Candy’s mother) says – “Music is a must for autism. When words fail, music speaks.” Robert and Sandy wrote a beautiful song titled “Faith, Hope and Love” which has received national attention.
Now, at 14 Candy communicates through her painting. She is an amazing professional artist in spite of having severe autism. The University of California Irvine is featuring Candy’s latest art titled “Mr.Sun” on its magazine cover (the summer issue). Her paintings have also appeared in two art books – “Artism: The Art of Autism” and “The Art of Autism: Shifting Perceptions” by Debra Hosseini.
Some of her work currently hangs in U.S Representative Jan Schakowsky’s Chicago office and Park Ridge City Hall state Senator Dan Kotowski’s Chicago office. She also has media coverage – The Los Angeles Times, The Chicago Tribune, Fox Chicago News, ABC7 Chicago News are to name a few.
Candy is showing the world that children with autism are capable of achieving. They do have great potential for excellence!
Message to other children :
Some of her work currently hangs in U.S Representative Jan Schakowsky’s Chicago office and Park Ridge City Hall state Senator Dan Kotowski’s Chicago office. She also has media coverage – The Los Angeles Times, The Chicago Tribune, Fox Chicago News, ABC7 Chicago News are to name a few.
Candy is showing the world that children with autism are capable of achieving. They do have great potential for excellence!
Message to other children :
Candy communicates - “Do not lose hope”.
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Candy communicates - “Keep your inner self bright and colorful in every situation.”
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Inspiration for the month of April (Willow)
May of 2014 a beautiful, artistic, positive minded, charming 14 year old girl from Arizona - Willow, was diagnosed with Undifferentiated Sarcoma in her left jaw. This is an extremely rare form of cancer hence the treatment is very difficult.
During the initial stage Willow had a lump on her left jaw the size of half of a grapefruit which made her unable to talk or eat. She remained on liquefied foods for several weeks. The lump had enveloped her cheekbone, embedded a molar to the point of lacerating her inner cheek if she spoke and leaving her with the ability to open only 1/5 th of her mouth’s normal ability. Dr.Watanabe started her on the treatment of Ewing’s.
Willow has gone through the dreadful cancer treatment of multiple shots, radiations, chemo therapy etc. along with their horrible side effects. Now she is on remission.
The hardship of 11 months has not made the teenager tired, exhausted sad or depressed but it has turned Willow into a wise, matured, courageous, compassionate and amazing girl.
During the initial stage Willow had a lump on her left jaw the size of half of a grapefruit which made her unable to talk or eat. She remained on liquefied foods for several weeks. The lump had enveloped her cheekbone, embedded a molar to the point of lacerating her inner cheek if she spoke and leaving her with the ability to open only 1/5 th of her mouth’s normal ability. Dr.Watanabe started her on the treatment of Ewing’s.
Willow has gone through the dreadful cancer treatment of multiple shots, radiations, chemo therapy etc. along with their horrible side effects. Now she is on remission.
The hardship of 11 months has not made the teenager tired, exhausted sad or depressed but it has turned Willow into a wise, matured, courageous, compassionate and amazing girl.
Apart from being a professional artist she is making Warrior crowns using wrapped wire, artificial flowers, butterflies and ribbons for gifting them to other children suffering from cancer at Phoenix Children’s Hospital.
According to Shan Lee, “Willow is a power house and emits her own light.”
According to Shan Lee, “Willow is a power house and emits her own light.”
Willow’s message to other children - "Make sure you reach out to family and friends for support, because they will lift you up when you need it most. Smiling no matter how bad it gets can help you feel better and stay stronger!"
Inspiration for the month of March ( Hannah Higgins)
Hannah Higgins was diagnosed with kidney cancer(Bilateral Wilms tumor) in February 2014 when she was 5 and was treated at Rady Children's Hospital in San Diego. As part of her treatment she underwent chemotherapy, radiation as well as surgery. According to her parents "She approached us one day and said she wanted to do a commercial to explain to other kids what they can expect when going through cancer and show them how brave she has been."
Hannah's message to other children - "I am brave and you can be brave also".
Hannah's message to other children - "I am brave and you can be brave also".
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