- Current Age:
- Home State:
- Diagnosis Date:
- January 17, 2010
- MPS/Sanfilippo Type:
- MPS III-A
- Noelle and William
- Autin and Aiden
What it felt like when we learned our child has Sanfilippo Syndrome…
I’ll never forget the day we got the phone call. The genetic counselor on the other end went on and on and all I thought was, well get to the part on how we fix this. Then she said it, “This disease is terminal and there is no cure or treatment.” I’ll never know what was said after, I was too busy trying to breathe. When I hung up with her, a sense of grief and dread washed over me. That first week my husband and I grieved. Although we had not lost Logan yet, we had lost this wonderful future we had planned for him. After that blur of a week came acceptance and we decided it was time to take action and try to find something to help and to also enjoy every single moment we can.
TELL US ABOUT YOUR CHILD AND WHAT HE/SHE ENJOYS?
Logan loves jumping on the trampoline and riding his bike. He has to watch Wow Wow Wubbzy everyday :). He loves listening to Queen and The Eagles. His favorite places are any playground and a beach with waves. But most of all Logan’s absolute favorite thing is spending time with his Dad.
HOW HAS SANFILIPPO AFFECTED OUR CHILD?
Sanfilippo has taken a lot away from Logan. He used to communicate with words. But around the age of 4 he started to forget his words, even with the help of speech therapy. He is still able to communicate using PECS (Picture Exchange Communication System.) Sanfilippo has caused major behavioral issues; for example, aggression, restlessness, hyperactivity. Some days are harder than others. Just recently Logan has started having seizures. Luckily we were able to get them under control with medication. Logan has many surgeries and has spent a good portion of his life in the hospital.
How has Sanfilippo affected our entire family?
We are definitely not a typical family. Our other two boys have had to grow up a lot faster because of Sanfilippo Syndrome. We try our best not to burden them but with Billy being in the Navy and being deployed often I do need their help at times. We try to do as many things as a “normal” family would do but it always takes a little more work and planning to do so. Our family spends a lot of time at doctor offices, and hospitals. We have all had to learn to advocate for Logan in one way or another.
The hardest part of being a Sanfilippo parent is …
Because Logan is older, the hardest part for us is knowing that our child is dying and there is nothing we can do to stop it.
If we could ask just one thing from the world/people, it would be …
Just take a few minutes and learn about this devastating disease. Take a moment and walk in our family’s shoes, and you will see that it’s not easy to do alone. We can use all the help we can get to raise awareness and funds to find a treatment for these children.
Why are we asking you to donate to Cure Sanfilippo Foundation?
There is a chance for children to have that future that we dreamed of for our Logan. There are promising treatments out there but we can’t do it without your help!