When you first see Carter Sarker, what gets you is that gorgeous smile. He seems to be just like any other six-year-old boy, playing "pirates", climbing on jungle gyms and hugging up to his beloved big sister. But as you watch his story, you quickly realise, Carter is not like any other six-year-old boy, he is desperately fighting for his life and the chance to grow up.

At three-years-old, Carter, was diagnosed with Sanfilippo syndrome — a progressive, degenerative disorder that primarily affects the brain and spinal cord — also known as "childhood Alzheimer's".

“I think the most difficult one for me is there are times where we take him to his favourite place that he may be excited to go to, and he’ll look up at me and you can tell he is completely lost and he has no idea how he got there, and he’ll scream to go back to the car,” Jennifer says.

“We’ll go back to the car, and we’re both crying,” she continues. “He’s crying because he doesn’t know where he is, and I’m crying because… I know why this is happening, and I can’t change it.”


While Carter looks like he's fine from the outside, he is not. Sanfilippo is a rapidly degenerative brain disorder that will take his ability to talk, swallow, walk, he will develop seizures, will suffer severe dementia, and eventually die from the disease without intervention. A fate no child should ever have to face, nor any parent.

“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,” says Jennifer.

The disease, which affects 1 in 70,000 Australian children, is working on him every second and while currently there is no “available” treatment, Jennifer and Samir are desperately seeking help to raise funds so that Carter can participate in a new clinical trial, one which will help Carter and hopefully many more in the future.

Their goal is to raise $1 million in 1 month to fund the trial before it becomes too late for Carter.

“We don’t have another option, but we’re the type of family to say if there’s a chance, we’re going to try,” Jennifer says. “We want to do single everything in our power to try to change his fate.”

Their GoFundMe page has now raised over $300,000 in just over two weeks with the help of celebrities including Jamie Lee Curtis, Kate Mara, Josh Groban, Judd Apatow, James McEvoy and Maria Shriver, but now they need your help to reach their goal and help give Carter a chance at life.

Head to the GoFundMe page now to watch their video sharing their journey and donate now.

Click here for more information on Sanfilippo Syndrome.