About Paige
Paige was born on August 4, 2005 and was perfectly healthily. She was such a beautiful little girl. She seemed to develop normally; she rolled over, pulled to stand, cruised, and smiled all on time.
She had such a personality, I remember one time where she kept dropping her doll on its head and just wouldn’t stop laughing. It was adorable!!
At 10 months, Paige came down with her very first cold; she never even had an ear infection. We never suspected there were any problems! But everything changed when she had the seizure. That is the day that part of me died. After several hours in the ER the doctor came in to tell us that they found something in her basal ganglia. Before that I never even heard of the basal ganglia!!!
So began our quest for answers. Since then we have been to the following hospitals:
- Hackensack Medical Center
- Columbia New York
- Children’s Hospital of Philadelphia
- Children’s Hospital of Pittsburgh
- NYU Medical Center
- Mt. Sinai
We have seen over 10 neurologists, 5 geneticist, and 2 immunologists. We have driven as far as Atlanta and spoken to doctors and hospitals in Cleveland, Seattle, Los Angeles and Seattle. I even contacted several hospitals in the United Kingdom.
Paige has been sedated 12 times in 24 months, had over 12 video eeg’s, 5 mri’s, 2 muscle biopsy, 3 spinal taps, 2 skin biopsy, CT and a PET scan. Not to mention at least 100+ blood tests. She receives 13 hours of occupational/speech/physical therapy at home, 2 hours at the hospital and 1 at a private clinic, all this in just a week!
But after all this we have theories but nothing has been proven. The one positive is that we have met some amazing doctors and counselors. Dr. Akman at Columbia is wonderful! She is one of the nicest and most caring doctors I have ever met. Dr. Rubenstein from Albert Einstein in the Bronx has been so helpful. He is so easy to talk to and always answers our questions. Scott from Hackensack, I cannot even think of words to describe how amazing he has been to us!!!
So the search will continue. Fox 5 did a great job presenting our story, my next two goals are to get something on CNN or MSNBC so we can reach people all over the country and to get Paige admitted to the new program at the NIH.