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The Last Chance to Save My Son's Life From 'Childhood Alzheimer's'

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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.

Jen, Jen's son, and husband

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 most children. He was diagnosed with a devastating, fatal disease called Sanfilippo syndrome.  

Sanfilippo is a progressive brain disorder in children, caused by just one missing enzyme, but it’s an important one. Without 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, and walk. He will develop seizures, will struggle with severe dementia, and then die. Sanfilippo syndrome is referred to as “childhood Alzheimer’s.”

At age 6, Carter is starting to show the signs of the disease. Right now he can still speak a little bit. He can still run and play with his big sister Sophia. For now, he’s hanging on, but just barely. The Saving Carter campaign is as urgent as it gets. It’s now or never.

Our goal is to raise 1 million dollars in one month to give Carter his rightful chance at life. We can’t just sit back and accept he’s going to fade away and die, when there is something tangible that could save him. The 1 million dollars will go to fund a clinical trial that can give him a chance at life, and many families with Sanfilippo syndrome hope.

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

How you can help today:

1. If you’re able, please donate what you can to Carter’s GoFundMe page; no amount is too small and donations are tax deductible.

2. Share the page on social media with hashtags: #SavingCarter #NowOrNever and #1Million1Month

3. Share the GoFundMe link and these steps through email.

4. Leverage any avenue you have to make this go viral (or send leads/tips to

We know how quickly these campaigns can grow if supported and if shared with the masses. We need your help to contribute if you are able, and to help share so #SavingCarter can go viral and we can reach this goal. Please visit today to donate if you can, and help us share Carter’s story so we can reach our goal.

Carter can get a chance at life, and it will be thanks to you, but we need help now.

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

Originally published: May 25, 2018
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