Rice Lake 3 year old fights terminal disease, family hopes to ra - WQOW TV: Eau Claire, WI NEWS18 News, Weather, and Sports

Rice Lake 3 year old fights terminal disease, family hopes to raise awareness

Rice Lake (WQOW) - -

A fourth birthday is something to celebrate, unless every year brings you one step closer to the end. 

That's the case for three year old Sawyer Lagarde, whose life took a turn after a tragic diagnosis.

Her parents will tell you, Sawyer likes to be the center of attention. But that energy could change by her next birthday.

"She's the sweetest little thing," Sawyer's mother, Brittany Lagarde said. "It's hard because at this stage, I want to pull out all of my hair out with all of her hyper activity, but you know what's coming next and you know that's worse than this."

At the age of two, Sawyer was diagnosed with a terminal illness called Sanfilippo Syndrome.

"She'll lose the ability to process and learn her speech. She'll start stuttering, she'll start losing all of the words she knew," Brittany Lagarde said. "Basically she will lose all her skills, her mobility skills because Sanfilippo affects the whole body. Primarily the brain though, so she will go form this hyper activity stage, to a vegetable."

The Lagarde's said Sanfilippo Syndrome is challenging to diagnose and is often thought to be autism. That leaves a short amount of time for children to learn skills at such a young age before they start to have memory loss.

Sawyer's parents aren't giving up the fight easily. Last April, the Lagarde's tried a treatment that became available for children with Sanfilippo, but it is yet to be labeled as the cure for the syndrome.

"With Sawyer, we really pushed and fought hard to get her into this clinical trial. There are only a few very limited spots, so it was hard to get her in. It was a one time injection, so they don't know if the medicine is working. It's kind of inconclusive at this time. Our hope is that the treatment worked," Brittany Lagarde said.

The family will know if the treatment works overtime by closely paying attention to Sawyer's cognitive abilities. 

"I want to see her grow up and learn. I want to see her live a normal and as full of a life as possible. We just don't know if that's going to happen yet, but we have to live knowing that everyday is a gift, and every year is a gift," says Sam Legarde, Sawyer's father.

While the family is nervous for future birthdays, the Make-A-Wish Foundation is making Sawyer's upcoming fourth birthday extra special. The Lagarde family is heading to Disney World on Saturday to spend a week at the Magic Kingdom, with Sawyer's favorite princesses.

The Lagarde family is hopeful for a cure and they are looking to help other families that have children with Sanfilippo Syndrome. They started a birthday campaign to raise funds for the Sanfilippo Foundation. They're goal is to raise $10,000 by Sawyer's birthday on Thursday, January 18th. 

For more information on how you can make a donation, you can visit the Sawyer Strong: Cure Sanfilippo Facebook page. 

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