Story submitted - 2015
Harley was born on the 28th April 2005, he was full term and weighted 4lb 10, I knew he looked a little different to our other children but the hospital discharged us without any follow up appointments, we just got on at home the best way we could.
Harley was born on the 28th April 2005, he was full term and weighted 4lb 10, I knew he looked a little different to our other children but the hospital discharged us without any follow up appointments, we just got on at home the best way we could.
Harley was a very poor feeder and didn't gain much weight, he had hernias and undescended testicles, he was operated on at 15 weeks old! After lots of complaining and visits to the doctor we were referred to a geneticist! Harley started with epilepsy at 13 months, he had several days at a time of cluster fits which were a very worrying time but he always bounced back to be his smiley, bouncy, happy self!!
He was diagnosed with NCBRS at 3 years old, we knew nothing of the syndrome only what we faced with Harley. The last 10 years have been a challenge but also a learning curb. Harley may not be able to talk, go to the toilet, feed himself but that never stops us being grateful that he is ours, we admire his courage, happiness and his zest for life.
He was diagnosed with NCBRS at 3 years old, we knew nothing of the syndrome only what we faced with Harley. The last 10 years have been a challenge but also a learning curb. Harley may not be able to talk, go to the toilet, feed himself but that never stops us being grateful that he is ours, we admire his courage, happiness and his zest for life.
Contact US
NCBRS Worldwide Foundation
124 City Road, London, EC1V 2NX, United Kingdom |
|
Vertical Divider
|
Home | About NCBRS | What is NCBRS? | Resources for the Newly Diagnosed | Research | Patient Registry | Stories | Resources | Gallery | Events | Store | Donate | Get Involved | Translate
Copyright © 2023 NCBRS Worldwide Foundation | Registered charity in England & Wales 1190194