- Current Age:
- Home State:
- Diagnosis Date:
- February, 2016
- MPS/Sanfilippo Type:
- MPS III-A
- Richard and Brandi
What it felt like when we learned our child has Sanfilippo Syndrome…
The day we first heard the words Sanfilippo Syndrome, we were obviously devastated and very scared for Logan. There is no way to describe the feeling of despair and sadness when you are given this type of diagnosis for your child.
How has Sanfilippo affected our child?
Sanfilippo has affected Logan dramatically over the last year. She was only recently diagnosed but we began seeing symptoms a year ago. All of her speech is gone, and her cognitive ability has dramatically decreased. She sometimes has difficulty sleeping and is unable to do many normal activities like other kids her age.
How has Sanfilippo affected our entire family?
It is very difficult trying to give our son a normal daily life, because Logan needs as much attention as possible at all times. We are just trying to learn how to give both of our children the best life possible in living with this devastating disease.
The hardest part of being a Sanfilippo parent is …
The hardest part of this is watching your child lose all abilities and not being able to do anything about it. It is mentally and physically exhausting every day.
If we could tell people just one thing about Sanfilippo Syndrome, it would be …
These kids are so special, not only because they have this syndrome, but because despite all the terrible things happening within their bodies the majority of the time they are just joyful and loving and only know love. Being Logan’s Mom has made me a better person and helped me to be more understanding and appreciate all the little things in life like never before.
If we could ask just one thing from the world/people, it would be …
Share our stories to bring awareness and donate to help find a cure for our children.
Why are we asking you to donate to Cure Sanfilippo Foundation?
We want to find a cure as soon as possible but if it isn’t in time for our Logan, we hope it will be someday very soon so other children won’t suffer from this horrific disease.