 Stephanie Hernandez was absolutely shattered the day she found out from the geneticist that her son Jay was diagnosed with Sanfilippo Sndrome (type C). "It was like I died on that day, and I've been mourning ever since", she says. The Sanfilippo Life is a harsh terrain to navigate, a constant balancing act between remaining hopeful, happy and positive-minded on the one hand - counterbalanced with the ever-present, constantly buzzing-in-your-air fear of watching your own child lose every single skill they have - and then lose their life, way too early. Stephanie especially loves her beautiful boy's voice, and the way he soothes her when she's stressed out or anxious. And she can't imagine losing that. One person who is providing hope to Stephanie is a 15-year old boy named Connor Dobbyn - also with Sanfilippo Syndrome type C - because of Connor's ever-loquacious car rides with his dad, which have inspired Stephanie and her husband to believe that perhaps they too will be fortunate enough to hear their son Jay's voice for many, many years to come. Click below for video segment (2 minutes long) where Stephanie talks about being inspired by fellow Sanfilippo type C warrior Connor Dobbyn's Sanfilippo journey from the other side of the country (thanks to the power and impact of social media): When I found out that your son Connor also has Sanfilippo type C, it gave me hope that my son Jay will still be able to talk and laugh and smile for a long time to come "       To watch the full (12-minute) interview with Stephanie, click below: She was so welcoming, and so helpful. And what I appreciated is that she didn't sugar coat it. She told me, "This is what's going to happen, and here's what you need to be aware of" "
0 Comments
Leave a Reply. |
Author
Mike Dobbyn, Archives
June 2024
Categories
|
RSS Feed
