TSAOG’s Dr. Sergio Viroslav has a daughter with Prader-Willi Syndrome, so this cause is very close to his heart. He has agreed to share his personal story to help raise awareness:
We always felt something was amiss. This pregnancy was different than Alice’s prior one; fetal movement was sporadic and with less vigor. The ultrasound showed excessive amniotic fluid. At least the amniocentesis revealed the normal number of chromosomes.
One month to go, Alice was admitted to the hospital with a baby that wasn’t moving much; the OB had done all she could do in 1996. All we could do was wait for the lungs to mature and hope for the best.
Olivia was born 1/11/96. She weighed less than 6 lbs, her tone was low, but at least she was alive and eating.
She didn’t walk until she was three. Then this small infant who we were told had some sort of muscle or energy producing disorder began to gain weight. She didn’t particularly eat more than her siblings, though she did seem to care more about food then her older sister and younger brother.
In 2001 a visit to a childhood obesity clinic prompted the endocrinologist to check for Prader Willi Syndrome (PWS). The doctor told us not to worry. Olivia was engaging and bright. She was performing well at school, and the chromosome test was standard in working up obesity in children. We were cautiously optimistic.
As the Twin Towers were falling on September 11th we received the news. Olivia’s 15th paternal chromosome had a deletion – Prader Willi Syndrome.
Olivia is now a senior in college. Though we don’t know what her future will look like, every day is a challenge. The pantry is locked in our home. She takes a daily shot of growth hormone to help her muscles and metabolism. She takes medicine to help her when she becomes fatigued and medicine to help her cells use insulin more efficiently. Now she is on a blood thinner as she is recovering from a recent pulmonary embolism. Every day she is working out, counting her steps, and planning her meals. It is all encompassing.
That’s why we do this. We do this to help kids with Prader Willi . We do this because it’s the only way to fight. It’s the only way to find a cure.
“ The greatest of all mistakes is to do nothing because you can only do a little – do what you can.”- Sydney Smith
TSAOG will be selling raffle tickets and collecting donations in our clinics and online to help the Foundation for Prader-Willi Research work towards a cure for Prader-Willi Syndrome. All donations will go to the Foundation for Prader-Willi Research (FPWR).
The fundraising for FPWR will culminate with a family friendly walk at the Tobin Center on Saturday, October 26th from 9am-12pm. Please join us at this fun, family friendly event to help raise awareness of this disease and contribute what you can to help work towards a cure. Register or donate here.