Bellmead mother fights to find cure for son's terminal illness

Channel 6 news reporter Jasmin Caldwell reports.

BELLMEAD - A Bellmead mother is trying to raise awareness for her son's terminal illness. She said she wants to find a cure not only for her child, but for other families who are also dealing with the rare genetic disease.

Emily Parsons' son Jamie is only 7 years old, but he has the mentality of a child between the ages of two and four.  There's no doubt Parsons is a devoted mom, but she's already planning her son's funeral.

"I’ve cried many tears over that,” said Parsons. “I know that when the time comes I will be able to celebrate my son’s life, and I won't have to be stressing over the details about him leaving."

Jamie has a rare, progressive, terminal genetic disorder called MPS2, or Hunter’s Syndrome. His body is unable to break down complex sugar molecules within itself, which causes permanent physical and mental damage.

"When you hear there is no cure, the first thing you think is 'my God, Im going to lose my child' and it's devastating," Parsons said.

Parsons then started a social media campaign to raise awareness for those who have questions about the disease.

"One of the most important things is to make special needs children okay, to help people understand how to interact with them in public," Parsons said.

A nurse is at the home with Jamie 24 hours a day, and despite his disease, his mom said he is still a typical boy with a love for the movie "Cars." Parson said being with her son is always a time to celebrate  -- even when he leaves earth.

"But for me, I didn't want it to be sad, Parsons said. "Some of the unique things we have planned for Jamies funeral is we're going to play the SpongeBob theme song. He used to love the hotdog dance, so you know what? We're all going to get up and do the hotdog dance.

Jamie was diagnosed with Hunters Disease in 2014. The lifespan for Hunters Disease is 10-15 years. If you want to learn more about Jamies fight, you can click here.

© 2018 KCEN-TV


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