Oliver with his parents, Jen and Brian, and younger sister Reagan.
OLIVER KELLYCurrent Age: 4 Home State: Ohio Diagnosis Date: Nov. 6, 2019 Sanfilippo Type: MPS IIIB Parents: Brian and Jennifer Sibling: Reagan
What it felt like when we learned our child has Sanfilippo Syndrome…
Gutted. We had no idea something so cruel existed.
What our child loves the most is …
He loves putting together names, face, and families. He wants to know everyone’s name. He is a big, big hugger and so empathetic to everyone’s feelings. He loves books, being read to and reading on his own.
How has Sanfilippo affected our child?
He’s increasingly frustrated and irritable. Sleep is challenging.
How has Sanfilippo affected our entire family?
We grieve while we search for hope. We find happiness and gratitude for the sweet moments and every ear-to-ear smile Oliver gives us.
The hardest part of being a Sanfilippo parent is …
Seeing the sweetest child slip away from us. I remember just a year ago, I took him to swim class. As we entered the gym, there was an elderly lady sitting and waiting in a wheelchair by the door. We were running late, so I was in a hurry. Oliver made eye contact with her, stopped, tilted his head, and gave a big Oliver smile and wave. He loves everyone.
If we could ask just one thing from the world/people, it would be …
Be kind and grateful. We have no idea what we’re each dealing with and nothing is guaranteed.
Why are we asking you to donate to Cure Sanfilippo Foundation?
Cure Sanfilippo Foundation is focused on action towards a cure. This past year has been agonizing in feeling something was ‘off’ with Oliver and the endless nights of reading how to be a better parent, trying new ‘systems’, and participating in behavioral therapy. One day, this will be a newborn screen and a treatment, as needed. We want this to be today. There’s been so much progress, and there’s so much hope. We want our sweet Oliver to dance at his prom, to walk at his graduation, and to travel to see all the beauty of the world.
Our Latest News
Right now, we await to see if he qualifies for a clinical trial happening right down the road at Nationwide Children’s Hospital. The team there have already been amazing in so many ways – available, collaborative, and compassionate.
Please, help spread awareness of this disease by liking & sharing “Oliver’s Tomorrow.”
Every night for the past month, Oliver chooses his dad to read him a bedtime story – every single night. Then, Oliver looks at me, holds up a finger and says “Mom, tomorrow YOU can read me a story.” This is for his tomorrow. Our tomorrow.
Please consider donating.