The Drambel Family

Why We Got Involved

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.

We kept a positive attitude and started early intervention and did everything possible. At the age of two years old, we started hyperbaric oxygen and did close to 100 treatments. John showed progress, but it was not permanent and extremely taxing on our family. We did suit therapy, hippotherapy, and several other things as well which were excellent. Of course none of these were covered by insurance.

In our journeys to help John, we met Dr. Brunstrom. She is an incredible pediatric neurologist who has CP and dedicated to helping all these wonderful people who have CP and wants to eventually find a cure. We realized that all the things we are doing for John do not attack the core issue (brain damage). We are just treating his symptoms. In 2010, John is now 6 years old and is non-verbal and cannot walk independently and cannot sit up on his own.

We had a long discussion with the Dunays one night and we said, “Why don’t we just start our own non-profit and solely do research to Cure CP.” Well, here we are and the response has been tremendous. All of the positive support from all the families is truly inspiring and motivating.

With what is going on in modern medicine today, and with the support of all the people with CP and their families and friends, we are convinced that our child will be walking and talking by the time he graduates high school.

Sincerely,

Ed and Maurie Drambel

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