No child should have to die young, and no parents should have to watch their child struggle to survive and slip away due to a terrible illness. Sadly, this happens much too often.
One family is currently working to save Carter, a little boy who has been diagnosed with Sanfilippo disease.
According to the Cure Sanfilippo Foundation:
“Effects on the brain become apparent between 2-6 years of age — speech problems, developmental delays, challenging behaviors, extreme hyperactivity, and poor sleep. … Children go on to experience progressive dementia similar to Alzheimer’s, stealing away their skills and knowledge, until they pass away, often in their teenage years.”
Carter’s family is desperate to get him the treatment he needs, but his only hope lies in a clinical trial that is believed to be able to help treat the disease.
The trial is extremely expensive, so the family turned to GoFundMe to get help. They shared their story on their fundraiser page.
The page says:
“I’m Jen, Carter’s Mom. 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.”
“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.’
“Our #1 goal is to raise $1 million 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.”
Their story was read by some notable celebrities, who stepped in to help and who also shared the GoFundMe page in hopes that others would help, too.
It only took a few weeks for them to reach their million-dollar goal.
Thanks to Oprah Winfrey, Katy Perry, Mark Wahlberg, Disney chief Bob Iger, Matthew McConaughey’s Just Keep Livin Foundation, Jennifer Garner, 20th Century Fox, the Huvane family, the Lourd family, Los Angeles Lakers owner Jeanie Buss, Mary Parent, Shannon and Michael Rotenberg, the Wasserman Foundation, Netflix’s Scott Stuber and wife Molly Sims, James McAvoy, Rodger Berman, UTA, and Elizabeth Goldhirsh-Yellin, they even raised extra money to give to the foundation. The family was overwhelmed with gratitude.
Carter’s mom said:
“We reached the goal today, thanks to all of your help!!! 45 days and together we did it!!! … Sincerely, Samir, Jen, Sophia, and Carter aka C-Money.”
The family is beyond happy to know that their son will get to participate in the clinical trial and may have a chance to live a normal life.
The trial does not promise a cure, but it has helped other people suffering from similar diseases live longer and better lives. The family hopes it will give Carter a fighting chance.
Carter’s mom added:
“We are true believers that it takes a village to raise a child. We consider everyone a part of Carter’s village now. They are giving him a chance at life.”
This little boy has a lot of people offering hope, love, and support for him.
Hopefully, this clinical trial gives this amazing young boy and his family a chance at a normal life.
Watch their story below.
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