Stories

Why We Got Involved

Ed Drambel

In 2004, we had our second and third children. As twins typically do, they came early. They were born at 32 weeks and spent 5 weeks in the NICU and they were sent home together. Our daughter Katie progressed steadily without any difficulties in the NICU. John on the other hand was intubated, on reflux medication, many apnea and bradycardia events each day, etc…
John was sent home with us on an apnea monitor without oxygen. We had called our pediatrician to explain this and she ordered oxygen for us immediately. On the second day home, John had a severe apnea event and we went back to another NICU for 3 weeks when we found out John had several micro brain infarcts (damaged brain tissue). At that point, John was not the same child. We could not even touch him without John becoming extremely upset and bradycardic. Shortly thereafter, we knew John had cerebral palsy.

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Why We Want To Cure CP

Lizette Dunay

On May 9, 2002, our son Alexander came into this world.  There was nothing out of the ordinary about the pregnancy or his birth.  Everything seemed fine and on point.  That all changed during that first evening in the hospital.  We elected to have him stay that night in the nursery so my wife and I could get some sleep.  Around midnight we received an urgent knock on the door.  Alex had stopped breathing and had been resuscitated. A neonatologist was called, and after a few hours of diagnosis, they told us that Alex had a sizeable stroke and that there was a bleed in his left side of his brain.  It was unclear when the stroke happened.  Due to the size of the bleed, we think it most likely occurred in utero as opposed to during the actual birth. We were devastated and in shock.

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Timmy Dexter

Shari Dexter

Timmy is the first of three children. Born at 39 weeks after an almost uneventful pregnancy, his Apgar scores were normal. To us, Timmy seemed like a healthy baby boy…just every parents wish.

At the same time we had Timmy other friends we knew were having their first born too. Just as most first time parents do, we made comparisons of our son to their children. At every turn, while other parents were greeted with news of friends children who met their milestones — sitting, crawling, walking — we had nothing to report about Timmy. Finally after seeking    professional advice,  Timmy was diagnosed with cerebral palsy and as a result, our world was filled with questions. Why? What will happen to Timmy? How do we treat it? How will he be accepted by society? Will there be a cure soon…if ever in Timmy lifetime?

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Haley Metzger

Kevin Metzger

We lost our first pregnancy at 22 weeks. It was absolutely devastating. However after a few months my wife became pregnant again and we managed to make it to 32 weeks when our first daughter came early. She was held in the hospital for 3 weeks because she wasn’t feeding properly and she had a stage 1 brain bleed while she was in the hospital.

During those 3 weeks I was in a busy period at work, finishing my MBA and going to the hospital every day. I would wake up at 6:00 AM and go to the office. I worked until 4:00 PM when I would leave for school. I attended classes until 10:00 PM at night and then went to the hospital until 1:00 AM. Looking back I have no idea how I did it all.

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