- Current Age:
- Home State:
- Diagnosis Date:
- November 21, 2014
- MPS/Sanfilippo Type:
- Type A
- Jonathon and Nicole
- Brayden and Gage
What it felt like when we learned our child has Sanfilippo Syndrome…
Devastated is an understatement to the emotions we felt when the doctor gave us the news. Our world as we knew it felt like it was coming to an end. There was a knife placed in our hearts that can only be removed by a cure.
TELL US ABOUT YOUR CHILD AND WHAT HE/SHE ENJOYS?
Rylan loves to socialize and loves country music…like Florida Georgia line and Luke Bryan!! He also loves riding dirt bikes with his brothers and daddy!! Mickey Mouse is one of his biggest fans and we are as of right now looking into finding a school bus to drive???????? a short one! He wants his dad to buy one. Anything for our kiddos ????.
How has Sanfilippo affected our child?
Sanfilippo has affected every aspect of Rylan’s life. He is affected from head to toe. He is hyperactive, but runs out of energy fast. Most nights he suffers from sleep issues and this exacerbates his difficult behavior. He has a cognitive level of a 3 year old at the age of 5½. There are daily and weekly therapy sessions to help. However, Rylan is loved by everyone he meets. His charming personality is one we cherish every day.
How has Sanfilippo affected our entire family?
The family tries to stay busy and keep our mind off the fate of Rylan. Every day living with Sanfilippo is a struggle. It is hard on all of our family members. Some have distanced themselves and others have rallied around us and became much closer. In this journey we have gained a new Sanfilippo family as well. Our heart breaks for every child and family that deals with Sanfilippo.
The hardest part of being a Sanfilippo parent is …
Seeing your child’s life quickly slip out of your grasp and know there is nothing you can do to save them. There is mental and emotional exhaustion every day. On top of the daily behavioral issues there are Doctors appointments, therapy sessions and the constant fear of what we will be told at the next one. The hardest part has to be knowing our child may suffer until death if there is no cure found soon.
The biggest misconception people have about being a Sanfilippo parent is …
We attempt to raise Rylan and his bothers as normal as possible. But in reality, we know what his future holds without a cure. We ask everyone to join the fight to cure Sanfilippo not only for Rylan, but for all the precious children that have been dealt this life.
If we could tell people just one thing about Sanfilippo Syndrome, it would be …
Every minute of every day presents some of the most difficult challenges anyone could ever imagine.
If we could ask just one thing from the world/people, it would be …
Help us in our mission to save Rylan and all the other children who suffer daily from this unimaginable disease.
Why are we asking you to donate to Cure Sanfilippo Foundation?
Imagine this was your child or grandchild, niece or nephew. Could you see this as your fate? Do what you would do if it was your family? We fight as hard as we can every second of every day, but we cannot win this battle alone. We are asking for any help you can give so there may be a chance we don’t have to watch our son lose his battle with Sanfilippo.