Pyper was born on Friday, March 24, 2017. Within hours of birth, she wasn’t eating and became severely dehydrated and lethargic. Due to her declining health, Pyper was medivaced to the NICU at Kapiolani Medical Center for Women and Children on Oahu late Sunday night to receive the care that she so desperately needed. Pyper and I spent the next 6 weeks and 1 day in “Pyper’s Suite” at Kapiolani.
She was unable to eat and had very, very low tone—classic symptoms of Prader-Willi Syndrome. At 4 weeks old, due to her inability to eat orally, Pyper underwent surgery for Gastrostomy Tube (G-Tube) placement. On Sunday, May 7, I finally got the test results confirming Prader-Willi Syndrome. The very next day, we were sent home. Since our discharge, we have spent hundreds of hours in therapy and numerous doctors appointments, both on Kauai and Oahu. Pyper has also endured a plethora of tests, like a champ!
As you can imagine, it was overwhelming—and still is. I, along with most of our family, had never even heard of PWS until it was brought up as a possible diagnosis. Like most parents in the same situation, I was in denial—even more so when I found out that there is currently no cure and not many PWS patients in Hawaii. No parent wants to hear that their brand new bundle of joy may have any type of complications in life. However, despite the diagnosis, Pyper is doing very well.
To date, there is only one FDA approved drug for the treatment of Prader-Willi Syndrome. ONE! That one drug is Human Growth Hormone. Unfortunately, many families need to jump through hoops just to get an approval for GH for their children. My goals with this fundraising effort is to raise awareness and educate people on Prader-Willi Syndrome— especially in Hawaii where there are very few confirmed cases. More importantly, to help raise much needed funds for research, and hopefully one day find a cure for Pyper and her people with Prader-Willi Syndrome. 100% of your donations are tax deductible and will go directly to research for PWS. Mahalo for your support.