We are so sorry for this family. Please read their story, from their GoFundMe page below, and help if you are able:

My son is dying. There’s no other way to say it.  My beautiful, perfect little boy…is dying.  As I lay him down to sleep each night, my tears overflow, and a deep aching is in my heart at the reality of losing my child.  There is only ONE THING that can change his fate, and we are asking for your help. We are asking you to help save Carter.

Carter grew up loving to play “pirates”, climbing on jungle gyms, reading “Brown Bear”, and singing his ABC’s… like any child.  But Carter isn’t like any child.  Carter was diagnosed with a devastating, fatal disease called Sanfilippo Syndrome.  

Sanfilippo is a progressive brain disorder in little children, caused by just one missing enzyme… but it’s an important one.  Because he doesn’t have this enzyme, toxic storage material is building up in Carter’s brain every second.  You wouldn’t know it by just looking at him, but this disease will soon begin shutting down critical areas needed to function.  As degeneration rapidly progresses, Carter will lose the ability to talk, swallow, walk, he will develop seizures, will suffer severe dementia, and die.  They call it a “Childhood Alzheimer’s.”

At age 6, Carter is starting to show the signs of the disease.  Right now he can still talk, some.  He can still run and play with his big sister Sophia.  For now, he’s hanging on, but just barely.  This campaign for his LIFE is as urgent as it gets.  It’s Now or Never for Carter.

Our #1 goal is to raise $1 milllion dollars in 1 month, to give Carter his rightful chance at LIFE.  We can’t just sit back and accept that he’s going to fade away and die, not when there is something tangible that could save him.  The $1M will go to fund a clinical trial that can give him that chance.

The love for a child is like no other.  If you are a parent, you know you would “go to the ends of their earth for your little ones”.  We are asking you… will you please go there with us now, for Carter?

We know how quickly these campaigns can grow if supported and if shared with the masses.  Yes, we need your help to contribute what you are able, and to help share so #SavingCarter can go #viral, and we can reach this goal.

Carter can LIVE. Carter can get that chance at LIFE, and it will be thanks to you.  But it has to be now.

Our deepest thanks and words simply fail to express how incredibly grateful we are.

Jen, Samir (Carter’s Mom & Dad) and Sophia-age 8 (Carter’s loving big sister, who would do absolutely anything for her little brother)

#SavingCarter  # NowOrNever  #1Million1Month

HOW YOU CAN HELP TODAY

1. Donate what you can, no amount is too small and contributions are tax deductible

2. Share on all social media with hashtags #SavingCarter #NowOrNever and #1Million1Month

3. Email this GoFundMe link and these steps to all contacts you know

4. Leverage any avenue you have to make this go viral (or send leads/tips to jensarkar@yahoo.com)

WHERE IS YOUR MONEY GOING?

Every dollar goes to the 501(c)(3) nonprofit organization, Cure Sanfilippo Foundation, who is funding this trial that can give Carter a chance at life. The research is a novel enzyme replacement therapy that has had remarkable results of helping fix the brain in closely related diseases. 100% of the funds raised here will go toward the research. We are currently racing against time to fund this trial and get it up and running. It will help Carter and so many other kids also hoping for a chance at life.

WHY SO MUCH MONEY?

Getting a clinical trial up and running can cost millions of dollars. In Rare Diseases, large pharmaceutical companies have little interest because they don’t see ways to make a profit. The truth is that it is left up to parents to drive and fund the research for treatments and a cure. This will help fund this specific clinical trial that can save Carter and possibly thousands of other children with Sanfilippo in the future. If we can’t fund it, the clinical trial will not happen, and we are nearly out of TIME.

TIME IS OF THE ESSENCE

Children’s cognitive abilities are completely taken away in less than 2 years on average, once they begin regressing. In this time, children regress back to an infantile state, likely never to return. This rapidly progressive neurodegenerative disease will soon start taking over completely. Carter is 6 years old. I don’t want to lose my baby. This must happen now.

THERE IS A CLEAR FAST TRACK PATH TO TREATMENT

1. Manufacture clinical grade drug production

2. Final safety studies

3. FDA approval to proceed with clinical trial

4. Start clinical trial

If you would like to donate by check, please make the check out to: Cure Sanfilippo Foundation.  In memo, write:  For Saving Carter, and send to:
Cure Sanfilippo Foundation
PO Box 6901
Columbia, SC 29260