- Current Age:
- Home State:
- Diagnosis Date:
- January 26, 2016
- MPS/Sanfilippo Type:
- MPS III-A
- Colton and Caroline
What it felt like when we learned our child has Sanfilippo Syndrome…
Pure devastation is the only thing that comes close to that feeling. It feels like you are mourning the death of your child while they are still alive. This is exactly why a cure is paramount.
What our child Loves the most is…
Everett loves to ride on the tractors and watch YouTube videos. He also loves to sing, specifically Five Little Monkeys, all day everyday! He loves spending time with his grandparents and other family.
How has Sanfilippo affected our child?
Everett has always had delays; developmental delays, speech delays, and cognitive delays. We now know that because of Sanfilippo our sweet boy never stood a chance at “normal”. It has already caused him to not develop so many skills on time and some not at all. Everett is full of energy and love but can be demanding and difficult to handle most of the time. We know this is because of Sanfilippo but it is hard as parents to not be able to correct these behaviors. Because of this a cure is necessary to stop the regression of what he is able to do and say!
How has Sanfilippo affected our entire family?
This is still so new so we are all still shocked, devastated, and weary.
The hardest part of being a Sanfilippo parent is …
Knowing that we will never know who Everett “could” have been. We know this is who he always was going to be but for 3.5 years we assumed he would outgrow the delays and he would do all the things parents expect their children to do. We pray for grace daily and to keep our faith and mind on the day at hand; the future is so scary. Our new reality is pushing back the thoughts of fear. When will he regress? How many good years does he have left? Etc.
If we could ask just one thing from the world/people, it would be …
Spread the word and pray for all of our sweet Sanfilippo kiddos.
Why are we asking you to donate to Cure Sanfilippo Foundation?
The world of rare disease is a cruel one, one we didn’t choose to be a part of. Sanfilippo Sydrome needs the tools (funds) to conduct adequate research to ensure a timely cure is found to save our precious children. Families have suffered with no treatment or cure and watched their children leave them. We pray you would feel led to donate to Cure Sanfilippo Foundation so that when future families have a child/children diagnosed they won’t be AS devastated as we all are right now. Help us fight to save our babies.