Get to know the Hyder family – Jonathon, Nicole, Brayden, Gage, and Rylan!
Find out what the past year has been like in their lives with this week’s Family Friday.
Get a glimpse into living with Sanfilippo Syndrome through the Hyder’s honest and insightful perspective.
The Hyders live in Tennessee. Rylan turned 10 in December and was diagnosed with Sanfilippo in November 2014. They were the first partner-family to join Cure Sanfilippo Foundation, so they have a special place in the Foundation’s history.
What has been going on in your family and for your child in the past year? What have been hard parts? What have been bright spots?
Rylan had a feeding tube placed February 6, 2020. He was getting worse – choking on foods and liquids. It was a hard pill to swallow, knowing that is another step backwards in this Sanfilippo journey. We also knew that was the best decision and quality of life for Rylan.
Rylan is happy most of the time, and to us that is one of the most important things. If he is happy and feeling good and having a good day, so do we!!!!! We have no other option but to be happy and thankful when he is happy!
Rylan’s super sibling Brayden will be turning the big 13 this year! Brayden is a wonderful big brother and I know is going to be a wonderful human because of this journey. We did have Brayden tested to see if he was a Sanfilippo carrier and unfortunately he is. He did pretty well with the unfortunate news and is very well educated about it.
It hurt my heart when I found out he was a carrier. But when we talked about it, we decided knowledge is power, and we can prevent a child from being born with Sanfilippo in the future.
What is your child like today, compared to when they were diagnosed?
When Rylan was diagnosed, he was full throttle, all day and all night. He loved to eat pizza and ice cream, ride his four wheeler, and do all kinds of things outside with the boys. He sang every country song on the radio! Fast forward 6 years later, we never hear words because he can no longer talk. He is fed with a tube because he can’t chew and swallow properly.
In return, Rylan is the most-loving child ever. He is a lap baby and an all-day kisser. He has shown us the true meaning of unconditional love.
What is one thing people would be surprised to know about living with Sanfilippo?
Just because it is bedtime doesn’t mean you will be sleeping. Children with Sanfilippo can go with no sleep for the longest times because of the brain damage Sanfilippo is causing. As a parent, you will never sleep again because when they are sleeping, you still have to have one eye open! 24/7