Raising awareness for our sweet Jack!

Our best friends are going through something that is so devastating, and so many people have reached out asking how they can help.

With Amber and Dave’s permission I want to share Jack’s story, and ask for support for this amazing family that we love so much.

“Our Jack at 2 1/2 years old has been diagnosed with Sanfilippo Syndrome Type A. There is no cure and no treatments available. He will lose his ability walk, talk, eat and eventually will take his life. The life expectancy is short.

Dave and I can’t accept this. We have been grieving for a child that is standing right in front of us happy and fully functioning but everyday this syndrome is attacking his brain. We are supposed to sit back and watch this happen to our baby.

As a mother I am supposed to protect him. And being told there’s nothing we can do has me shattered. I’ve always loved the thought of Benny & Jack growing up together and always having each other. That’s no longer an option. The genetic counselor talking about palliative care for my 2 year old has my head spinning. I just can’t. This can’t be how Jacks story ends. This is the most excruciating pain I’ve ever known and I need hope that somehow, some way there will be a cure for our sweet Jack. One in time before everything is taken from him. Time is against us. There are no fda approved treatments or therapies for Sanfilippo. How do I change this? How can I save him? We are so desperate to find a cure. We need a miracle. He’s our world and having no options is killing us.

Looking at clinical trials and hoping something is available before it’s too late. Share anything and everything on Sanfilippo. We need a cure. Please. We have to save our Jack. #curesanfilippo

Share this post. Anything to get awareness out on this terrible syndrome. Please don’t give up on our Jack. We want to fight for him and so many other families watching this syndrome take their child’s life. This is unbearable. Without researchers and clinical trials we stand no chance.”

We are hoping and praying for a miracle in the days to come with research and trials.

If you know Jack, he is the sweetest boy and adores his brother Benjamin (Benny).

Amber and Dave are going through some extremely difficult times. The emotional burden is more than any family should have to bear. Adding the financial stress of medical bills and time off work, is a burden I’d like to help lift off their shoulders.

I’m asking that we all come together for Jack and rally! Please help support the Negele family during this difficult time and the unimaginable future they may be facing. We are all just absolutely devastated and in disbelief. Your support will help ease the strain of everyday life so this family can focus on their boys and soak up every minute of it.