Tags: childhood | alzheimers | sanfilippo syndrome | boy

'Childhood Alzheimer's' Leaves Family Fighting to Save Son

'Childhood Alzheimer's' Leaves Family Fighting to Save Son
(Mohamad Faizal Ramli/Dreamstime.com)

By    |   Monday, 18 June 2018 02:20 PM

A disorder described as "childhood Alzheimer's" has the family of a 6-year-old boy fighting for his life against the condition called Sanfilippo Syndrome, ABC News reported.

Carter Sarker was diagnosed with disorder in 2016, a rare neuro-degenerative disorder that leaves those stricken with it without the ability to talk, swallow and walk, the broadcaster said. The child will likely develop seizures and suffer from severe dementia.

"Carter is probably one of the most loving children you'll ever meet," Jennifer Sarker, Carter's mother told ABC's "Good Morning America." "He's very affectionate, he's very playful. He keeps us on our toes and makes us laugh daily. He's sporty and outgoing and just loves to meet everyone."

ABC News wrote that the Sarker family is now trying to raise $1 million in one month to fund a clinical trial that could not only save Carter's life, but others suffering from the same disorder.

One gene therapy treatment being considered aims to introduce a healthy copy of the faulty gene into a patient to enable the missing enzyme to be produced in the patient's own cells, according to the Sanfilippo Children's Foundation website.

A second potential treatment would take stem cells from the bone marrow or blood of the patient and have the genetic fault corrected using gene therapy so that they overproduce the missing enzyme, the website said. Those cells are then transplanted back into the patient, per the website.

There are also enzyme replacement therapy, substrate reduction therapy, and palliative treatments, according to the foundation's website. It was not known which treatment would be used in Sarker's trial.

Jennifer and Samir Sarkar created the crowdfunding page savingcarter.com on May 22, and the campaign has raised more than $617,000 and will close on June 22, "Good Morning America" said. The funds go directly to Cure Sanfilippo Foundation, which is funding Sarker's trial, the network said.

Divaj Vat, Carter's doctor, told "Good Morning America" that Sanfilippo affects about one in 70,000 children.

"Unfortunately, because there is no proven treatment and the disease always gets worse, patients with this disease usually don't live past their teenage or early adult years," Vat, a physician and biochemical geneticist at Kaiser Permanente in Southern California, told the network.

"The metabolic genetics team at Kaiser Permanente is committed to assisting and guiding patients with these kinds of disorders to suitable clinical trials and treatments. Given Carter’s situation, he is doing remarkably well right now. His parents are doing a great job caring and advocating for him," he added.

Until the trial, the Sarker's are keeping Carter's brain active with speech therapy, physical and occupational therapy, music therapy and more, "Good Morning America" wrote.

"He's progressing, which is great, especially when doctors say they lose their speech and language around 5 with this disease," Sarker said. "We are consistently trying to keep him on his toes, so we have a little more time with him."

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A disorder described as "childhood Alzheimer's" has the family of a 6-year-old boy fighting for his life against the condition called Sanfilippo Syndrome.
childhood, alzheimers, sanfilippo syndrome, boy
Monday, 18 June 2018 02:20 PM
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