BENEFITING: NYU Langone Medical Center
EVENT DATE: Nov 02, 2014
Kevin and I are running for TeamFACES and for our daughter, EIly. Eily is 3 1/2 years old and has Sturge-Weber Syndrome. We will never be able to find the right words to express our deepest respect, appreciation, and gratitude for the doctors and nurses that believed in Eily, fought for her, and gave her the most amazing second chance. The least we could do is join TeamFaces and help fundraise to support their efforts.
We arrived at NYU Langone Medical Center in the middle of the night with our then 6 month old baby girl in July, 2011. She had been seizing uncontrollably and our local hospital had exhausted all their options and told us there wasn't much more they could do. We watched as Eily seized for 90 minutes, eyes rolling, body wrenching, shallow breathing. We were watching her slip away. We transferred to NYU by ambulance in a desperate attempt to find a doctor, a drug, a procedure, anything, that would help.
We spent weeks and sometimes months inpatient at NYU. Every step foward seemed to be followed up by 3 steps back. A new medication would work for 2-3 weeks and then the seizures would return and often be worse than before. The nurses, therapists, doctors, etc became our second family. Afterall, Eily and I spent more time in the hospital with them than we did at home with our real family. Kevin and I saw each other on facetime and short video clips and for brief moments when we switched places at the hospital. He stayed home during the week and took care of our 2 boys and went to work and then drove to the city to switch with me on Saurdays so I could see the boys. It was torture. Dividing my time and my heart, feeling like I had to chose one child over the other. They were all babies, each one of them needing me equally. Caellum was 3 and Brogan was 2. But life went on and we made it work.
By winter of 2013 it had become clear that Eily's seizures were no longer responding to the enormous amounts of medication. She was weak and her brain was suffering. Her EEGs showed increased seizures and her MRI showed atrophy (shrinking) of her left hemisphere. Her immune system was so frail and every passing cold or virus caused her seizures to increase. Her seizure meds stoppped working and she had terrible side effects from the drugs (bruising, hair loss, weight gain, weight loss, thyroid problems, visual problems, respiratory problems, blood pressure problems, and the list goes on). We began begging for a consult with a neurosurgeon. Eily has bilateral sturge-weber. Both sides of her brain seized. This complicated the possibility of surgical options. We had consulted with multiple neurologists and neurosurgeons since her birth and all had told us there would never be a surgical option for her because of her bilateral involvement. But we were going to lose her. How could we not try. Dr Miles and Dr Weiner fought for her, believed in her, and guided us through the most horrific decision no parent should ever have to make. On April 18, 2013 Eily had a functional left hemispherectomy. Her prognosis was really unknown. There are very few cases of bilateral sturge weber children that have had hemispherectomies. We were terrified but desperate to give her a chance. It has been a trecherous road to recovery for Eily. She is not seizure free, but we weren't expecting her to be. However, her seizures are infrequent, milder, and respond well to rescue meds. She is currently well controlled on one seizure medication. She amazes us everyday with her abilities and bright spirit. She still has set backs. But the good days far out number the bad and those good days are so so GOOD.
We are running for her because we know if she could she would do it herself. We owe everything to NYUs neurology and neurosurgery departments. Her smile and her laugh are the most amazing gift.
Please help us give back. No amount is too small or too big. And every dollar is a step closer to our goal. You'll see us in the neighborhoods, parks, trails, etc- training is no joke. Cheer us on, follow us on facebook, make a donation, and maybe even come watch us finish those grueling 26.2 miles.
FACES at NYU Langone Medical Center wrote -
TeamFACES is proud to run in the 2014 TCS New York City Marathon among thousands of others as they race on behalf of important, meaningful causes. Our athletes aimed to spread epilepsy awareness and support for the mission of FACES while completing this 26.2 mile event.
FACES (Finding a Cure for Epilepsy and Seizures) at NYU Langone Medical Center is dedicated to helping people and families living with epilepsy, through research, education, and clinical and community support programs.
Funds raised by each runner will benefit research efforts to improve epilepsy care, educational materials and cost-free seminars, scholarship opportunities, family initiatives, and various events hosted by FACES throughout the year.
To learn more about FACES, please click here to watch our video