Saving Carter

$1,017,200 of $1.0M goal

Raised by 9,698 people in 4 months
Created May 22, 2018
Jennifer Sarkar
on behalf of Cure Sanfilippo Foundation

Would you please take a moment & watch the 3 minute video above, telling Carter and our family's story?  **All donations are tax deductible ** 

I'm Jen, Carter's Mom.  My son is dying. There’s no other way to say it.  My beautiful, perfect little 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


1. Donate what you can, no amount is too small and donations 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


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. All donations are tax deductible. 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.  ***Any donations received above the goal will go directly to Cure Sanfilippo Foundation new research projects in need of funding***



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.


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.


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

Video thanks to Valentina Vee & Benjamin Von Wong.  Sound credits Andrew Kesler  Photos: Anna Tenne Photography

+ Read More
We just wanted to say thank you so much for all of your help, love and support. YOU helped us reach the goal today!! Thank you for all of your help!!! 45 days and together we did It!!!!

Thank you so much for giving HOPE to Carter and so many other kids❤️ We will be sure to keep you updated on the progress in the coming months. Just amazing, THANK YOU!!!

Wishing you a very happy evening!

Samir, jen, Sophia, and Carter aka C-Money
+ Read More
Happy Monday!

We took yesterday off for some extra family time as it was definitely needed.

As many of you know we did not reach our goal on Saturday but we are determined and will not stop until the goal is met. We are back at it again today in hopes that we can raise up the rest of the $22,000 needed to reach our goal!!! We are hopeful that we can do this by next Sunday the faster the money is raised, the faster we can get the treatment to these children.

In all honesty, we can never thank you all enough for your support, help, and love ❤️There’s no possible way we would have gotten this far or come this close without you! You all are the driving force and we can never thank you enough.


Samir, jen, Sophia, and Carter aka C-Money #SavingCarter #NowOrNever #ItTakesAVillage #RallyTime

If you would like to see the video of Carter and his first sand crab experience please feel free to check it out at:
Instagram: @Saving_Carter
Facebook: @CartersChallenge
+ Read More
Everyone!! We just received a $25,000 Matching Donation offer, starting NOW!!

This match came from a family who has been fighting Sanfilippo Syndrome for 20 years. Their son Ben passed away from Sanfilippo in 2014, just a month shy of his 18th birthday The touching note below is from Ben's parents.

. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
From the Siedman's:

This is Ben. He was amazing. He loved cows and tractors. He had a story to tell. It began 22 years ago when he was diagnosed with Sanfilippo Syndrome. At the time there were 5 researchers worldwide studying the disorder. Ben’s parents, knew they could change that. Ben and his story inspired greatness by many.

Because of Ben there are now gene therapy clinical trials underway.

But time ran out. Four years ago, Ben’s story ended.

Today, Carter has a story to tell. He tells it for Ben, for all the children who need the science to do more. NOW Ben's Dream hopes to INSPIRE you to help write the next chapter.

Ben’s Dream is offering $25,000 to MATCH donations to #SavingCarter in the next 48 hrs.

Continue Ben’s story. CHANGE the ending to Carter’s. DONATE. Now, today, again.
. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

Let’s honor Ben's Dream and reach this incredibly personal and selfless $25,000 Match Offer! With your help in sharing, in 48 hours we could raise $50,000 in honor of Ben’s Dream which would put us at just under $850,000. Please share, donate, and tell your friends $25,000 is being MATCHED NOW!!! THANK YOU-THANK YOU-THANK YOU #1Million1Month #NowOrNever #ItTakesAVillage #SaveCarter #RallyTime
+ Read More
Running in the park in a wide grassy field, you spot a dandelion and pick it. “Wook mommy daddy a flower!” You are so excited to show us what you found. You take a deep breath, blow it out, and we all make a wish. I wonder what you wished for. I know daddy and I wish time would stop so we could stay in this moment just a little bit more.

One wish, that’s all you get. Would you wish for a giant mega birthday cake, a dinosaur to play with? Maybe a big jumpy castle you and Sophia could play in? Would you wish for your favorite candy m&m’s or would you wish that you could have a Halloween Birthday again?

Do you wish for days like this where you wander free without a care in the world; Trying to catch geese while running on the lake beach? Do you wish for more cuddle time, maybe just one more show?

All I know is time will not stop and we will never be ready to let you go.

Just a chance at hope, that’s all we need to make sure that we have done everything in our power to possibly give you anything and everything! We are so close and we’re almost there please if you’re reading this note, donate and share.

One wish. One dream. This trial could possibly change everything.
+ Read More
Read a Previous Update

$1,017,200 of $1.0M goal

Raised by 9,698 people in 4 months
Created May 22, 2018
Jennifer Sarkar
on behalf of Cure Sanfilippo Foundation
Your share could be bringing in donations. Sign in to track your impact.
We will never post without your permission.
In the future, we'll let you know if your sharing brings in any donations.
We weren't able to connect your Facebook account. Please try again later.
Kris Mitchell
19 hours ago
William Cheung
9 days ago
10 days ago
Kendra Maher
12 days ago
Laura Cantor
12 days ago
Michelle morgan
13 days ago
Stephen H
14 days ago
Zach A
15 days ago
Brooke Silverman
18 days ago
Byron Allen
20 days ago
Use My Email Address
By continuing, you agree with the GoFundMe
terms and privacy policy
There's an issue with this Campaign Organizer's account. Our team has contacted them with the solution! Please ask them to sign in to GoFundMe and check their account. Return to Campaign

Are you ready for the next step?
Even a $5 donation can help!
Donate Now Not now
Connect on Facebook to keep track of how many donations your share brings.
We will never post on Facebook without your permission.