Owen was born Saturday December 2, 2006, via scheduled C- section at Hunterdon Medical Center. Typically, when you deliver your baby, you hear their little cries and get to see them and hold them. This was not the case with Owen. Owen did not cry, and I saw him very briefly before he was whisked away to the special care nursery. The first time I held Owen was about 8pm and only for about 5 minutes before going back to the nursery. Monday morning the Neonatologist came into my room and told me they needed to transfer Owen to St. Peter’s Hospital in New Brunswick for additional testing as they were not sure what was wrong with him. At this point the only thing we knew is that Owen was having difficulty feeding and was “floppy”. Within hours we were kissing Owen goodbye as he was wheeled out of the nursery.
At St.Peters, Owen was in the main NICU for about 2 days where he received numerous tests, but no real answers. On the third day Owen was sent to the step-down unit where he basically had to eat and grow as we waited for genetic testing. For the next three weeks, I did everything I could to take care of Owen in the unit. The nursing staff was amazing and helped me learn all things I needed in order to take Owen home. Christmas Eve 2006 we received the genetic results, and we were told Owen had Prader-Willi syndrome. The doctors were not able to give us a lot of information but told us we needed to make an appointment with a specialist, and we were cautioned not to go online and research as we would most likely get a worst case scenario. The good news was Owen could come home Christmas day! Best Christmas present ever!
The following weeks and months were challenging. Owen started receiving Physical and Speech therapy at 6 weeks old through early intervention and continued until he turned 3, then he went into Clinton Township Preschool program. The early years were filled with therapies to help Owen get stronger, learn to talk and improve his fine motor skills and many doctor appointments with numerous specialists, surgeries and a few hospital stays.
Prader Willi syndrome starts out with babies having failure to thrive but will eventually turn into your child never feeling full, food seeking/stealing, low metabolism and other medical issues. As Owen got older the food obsession got to the point where we needed to put locks on our fridge and cabinets to prevent him from overeating. Children with Prader Willi also have behavioral issues and learning disabilities. Owen’s behavioral issues became severe enough that we needed to enroll him in an out of district school when he was in 6th grade. We were lucky to find The Midland School and Owen started there in December 2019.
Owen loves school, his favorite subjects are Science and Social Studies. He enjoys talking to people and I frequently tell him he has never met a stranger. Owen is very compassionate and enjoys helping others. Owen enjoys all sports and participates in Special Olympics Track and Field and is involved with the Hunterdon Outreach Program for about 10 years and has made many friends. Owen has been working with a personal trainer since April 2021 and has been successful in maintaining his weight , and at his latest Doctor’s appointment lost 11 pounds. We are so proud of his hard work and look forward to his continued success.