Saving Carter

$752,036 of $1.0M goal

Raised by 8,145 people in 1 month
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.



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

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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.
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Friends, $623,000 has been raised so far at , thanks to you!! We are closing in on the $1Million goal and have 4 more full days to get there. We believe it will happen. In the past week, some amazing things have happened that we want to share:

--Over $623,000 has been raised ($10,000 more has come in just since this morning, thanks to sharing!)

--A Fundraising evening in California raised $93,000 on June 12th!

--A Single Matching Donor donated an additional $93,000 Match, the largest in the Foundation's history. The Matching Donor is Elizabeth Goldhirsh-Yellin, in Memory of her parents Bernard & Wendy Goldhirsh. Incredible generosity and we are all so thankful!!!

--Recent coverage of the Sophia video (Carter's big sister) and campaign was covered by Inside Edition:

--Coverage just this morning from Good Morning America on web, Facebook and Twitter:

--Madonna was one of the latest stars to share on Twitter

-- Our Family is scheduled to be on CNN this Thursday!!

The countdown is really on now! Under 5 days to reach this goal. This is a historic effort for Sanfilippo. Some people have said it can't be done. Never has $1Million been raised in 1 month for Sanfilippo research to fund a clinical trial. This is to save Carter and so many other children. It's something special to be a part of this grassroots effort, where everyone is giving what they can, to help reach this goal.

Please help us continue this final week push by sharing, supporting, telling freinds, media, doing fundraisers, and anything else you can think of. All ideas welcome and we are humbled at your kindness and generosity.

We had a great Father's Day weekend here, and Carter and Sophia are so blessed to have Samir. So am I. We held on a little tighter this weekend, and cherish each precious moment we get. Thanks to you, we have real hope for the future! Thank you and a Happy Father's Day to all the great Dad's out there.

Jen, Samir, Sophia and Carter Sarkar Let's do this!

#SavingCarter #1Million1Month #NowOrNever #ItTakesAVilliage #LetsDoThis
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[New video] Hello again!

9 Days remaining and we are over $370,000 online, and with offline donations we will be adding in the next day, very near $500,000! Our forever thanks for your generous and kind support. Halfway mark to $1Million and time for our next big push to reach the goal.

We wanted you to be the first to see this NEW VIDEO, this one from Carter's big sister Sophia, who just recently turned 8 years old. What does a big sister think about all of this? These are issues that no child her age should have to deal with. As much as we protect her, she's a smart little girl. While she doesn't know all the details about Sanfilippo, she knows her little brother needs help, and quickly.

We find ourselves in tears every time we watch it, and yet it is so hopeful and encouraging at the same time. She fights as hard as any of us for her little brother.

Would you watch and share this new video, in the hopes that it creates another groundswell of donations and sharing?

Thank you again. 9 Days left. Every bit adds up and your support & sharing and telling others about this cause helps more than you can know.

Our Love always,

Samir, Jen, Sophia, and Carter

PS - check back to often to see the campaign increases and updates

#SavingCarter #1Million1Month #NowOrNever #ItTakesAVillage #SaveCarter #SaveTheUnicorns
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Hello Everyone!

Day 16 and we are almost at $300,000!!!! This is INCREDIBLE!!!

None of this would not be possible without your help, love, support, and generosity! Carter’s story has traveled far and wide thanks to not only you but also the extra help from some other amazing people such as Judd Apatow, Jamie Lee Curtis, Debra Messing, Selena Gomes, Jonah Hill, Kate Mara and many more! We are truly humbled by the outpour of love and support you all have shown Carter and cannot thank you enough!!

We have 15 days remaining to reach our goal so it is now time to kick it into overdrive! Please keep sharing, tell anyone and everyone you know about We have a challenge ready for you, will you help us?

For the next 15 days we are asking if you can please do the following:

If you able, please donate $5 or tag 5 friends who have not shared #SavingCarter and ask them to do the same. We know this sounds nuts but by you tagging 5 or donating $5 it is helping us reach more people, spread Carter’s story and every single penny adds up! It may not seem like a big difference but in rare disease it is those small victories that we cheer on the loudest. Please Tag family, friends, celebrities, mommy friends, co-workers anyone and everyone you can possibly think of and help us keep this momentum going!

We cannot express our gratitude to you all enough and know we have already asked for so much. Please help us. Please be a part of this. Please help us give Carter a chance at life!

Thank you so much from the bottom of our hearts,


Samir, jen, Sophia, and Carter aka C-Money

And yes, despite the most trying and impossible of circumstances, we try to keep things hopeful and light, hence our unicorn onesies We do this for our family, for Sophia, for Carter and it's a fun way to spread awareness about Sanfilippo Syndrome. We will ANYTHING to save Carter!

#SavingCarter #1Million1Month #NowOrNever #ItTakesAVillage #SaveCarter #SaveTheUnicorns
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$752,036 of $1.0M goal

Raised by 8,145 people in 1 month
Created May 22, 2018
Jennifer Sarkar
on behalf of Cure Sanfilippo Foundation
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