May 2015 Featured Child

“What doesn’t kill you makes you stronger.” My mother told me that long ago. I think it is Jonathan‘s mantra. When Jonathan was four years old a nurse made a mistake in his care following a tonsillectomy. He suffered a major hypoxic event: his lung had collapsed, his brain had swollen, and he was unresponsive. He was transferred to PICU where he was placed on a respirator. Things were bad and after four days, the doctors told us that Jonathan ...

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April 2015 Featured Child

Sarah started fourth grade like every other year and seemed to be excelling and then about 2 months into school her teacher started noticing that Sarah was having issues with focusing and remembering things and that she could tell it wasn’t on purpose. Of course we wondered at first if it was ADHD. This led us on a very long journey of miss-diagnosis and many doctors and tests including 3 MRI’s, 4 EEG’s, multiple times for lab work, sleep studies, ...

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March 2015 Featured Child

Jackson was born on January 18, 2011. After a year and a half of trying, and crying, and praying for a baby, pregnancy went smoothly, but delivery was traumatic for Jackson and mommy. He had torticollis, plagiocephaly and bracheocephaly. Jackson had physical therapy starting at 4 months. Then at 6 months began wearing a helmet. At 9 months the helmet came off and life rolled along.

Fast forward to the age of 3 and it started to appear that Jackson would ...

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February 2015 Featured Child

Bailey was born April 30, 2010, after a fantastic pregnancy and delivery. She was so happy, full of laughter and smiles. We could not be happier, she made our family complete. We had no idea what we were in for… Before Bailey was seven months old, she had her first seizure. It lasted about fifteen minutes, which seemed like an eternity. She had an EEG done about a month later and it was abnormal, I was hoping it was just ...

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January 2015 Featured Child

Brycen is 7 years old he has Osteogenesis Imperfecta type 1 otherwise known as Brittle Bone Disease. He also suffers from adhd, ocd, odd, and depression. Brycen started breaking bones when he was 15 months old and ever since it seems about every 4 – 5 months he breaks a bone. Brycen broke his femur bone at 20 months old. Which caused it to bow as it healed. We just found out that there is a treatment for his bone ...

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December 2014 Featured Child

Lainey is almost 15 months old and was born prematurely. She has been a mighty little fighter from the very beginning. It took months for her days home to exceed her days in the hospital! After months of testing, Lainey was diagnosed with partial seizure disorder and Todd’s Peresis, but her challenges have only made her work harder. Lainey adores and is adored by her big brother and two big sisters (who call her “Laineybug” ).

Her schedule of appointments and ...

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November 2014 Featured Child

This is 6 year old Mason. He has a form of epilepsy called Lennox-Gastaut Syndrome. His first seizure that we noticed happened when he was six months old. Since that time his treatments have included many different medicines, along with two years on the Ketogenic diet. His seizures today are daily, but “mild”- for which we remember to be grateful. Despite having global developmental delay, Mason learns and enjoys new things every single day. He loves music and light, and ...

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October 2014 Featured Child

Teagan (3years old) suffered her first seizure at just four hours old following two in utero strokes that caused damage to her frontal/parietal & occipital lobes from lack of oxygen (Hypoxic Ischemic Encephalopathy). She is the light of our lives and has since been diagnosed with mild Cerebral Palsy, Autism-moderate, Global developmental delay, bilateral hearing loss, strabismus exotropia (getting glasses soon) SPD and more! She is a fighter, survivor and an inspiration, she is a warrior!

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September 2014 Featured Child

Noah was born with a congenital condition called schizencephaly. In his case bilateral. Due to the missing areas of his brain Noah suffers from uncontrollable seizures and several kinds. His biggest battle with seizures are gelastic and breakthrough clonic/ tonic. Noah like many kids with epilepsy rarely understands what is happening to him and is often scared when he finally comes back from an episode. His heart is pure and he is here to remind us we all have a ...

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August 2014 Featured Child

We have a very special child we are featuring this month James Fulkerson. James is our foundations “Face of Epilepsy” we chose to represent our Chicagoland families. On August 24th I am honored to give this little boy a Super Hero’s Birthday to help celebrate his 5th Birthday. James truly is a SUPER HERO! Please take a moment to read his journey it will move you and touch your hearts. I LOVE YOU SWEET JAMES. Thank you to Jeff and ...

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