- Current Age:
- Home State:
- Diagnosis Date:
- July 27, 2017
- MPS/Sanfilippo Type:
- MPS III-A
- John and Lindsay
What it felt like when we learned our child has Sanfilippo Syndrome…
Disbelief. We had concerns about Caroline’s mild speech and motor delays but when we received the diagnosis of Sanfilippo it was shocking and didn’t feel real. Our lives were forever changed in all ways imaginable. Pain, heartbreak, grief, and loss of the future we had imagined for Caroline all followed in the days after the diagnosis and still continue.
What our child loves this most is…
Caroline loves being with her family! She especially loves her cousin, Henry, who is three months older than her, and is her best friend. She also loves to color, dance, and play outside. If you know Caroline, you know that she loves snuggle time while watching Daniel Tiger. She loves going to the zoo and all animals, especially her grandparents’ pets, Ranger (horse) and Hudson (dog). She is the most kind-hearted child with a sweet and silly personality.
How has Sanfilippo affected our child?
She has struggled to learn to talk and walk as easily as other children. We are so proud of how hard she has worked to meet age appropriate skills when her body makes it difficult. Talking, walking, jumping are things that she loves to do and Sanfilippo makes it much harder for our little girl to do the things she loves.
How has Sanfilippo affected our entire family?
It has made us grateful for each day with Caroline. We make a point to spend as much time as we can together and do things that we know Caroline enjoys. We love her with all of our hearts and make her feel that way every day. She has given us a new appreciation for life.
The hardest part of being a Sanfilippo parent is …
Watching Caroline, who is so innocent and loving, blossom into a beautiful and kind person and knowing that she is slowly going to be taken away from us. There is tremendous pain and fear of when we are going to lose Caroline and having to live each day knowing we are slowly getting closer to that day. We video her all of the time because we never know when the day will come that we won’t hear her sweet voice saying “I love you” or telling us about her day.
The biggest misconception people have about being a Sanfilippo parent is…
That we are always sad. Caroline brings so much joy to our lives. Not that we ever fully forget our reality, but her laughter, smiles, and experiencing life through her eyes makes our lives much more meaningful.
If we could ask just one thing from the world/people, it would be…
To love Caroline just as she is.
Why are we asking you to donate to Cure Sanfilippo Foundation?
Because no parent should have to experience the pain and helplessness of not being able to save their child. And these children deserve to have a long and happy life as beautiful and perfect as they are.