Hudson baby battles rare condition

Описание: The family of a 10-month-old Hudson baby with an extremely rare disorder are on a mission to get him to Boston Children's Hospital for treatment. Camron Monk was born with X-linked Myotubular Myopathy, or MTM. It's a condition only 1 in 50,000 males suffer from and affects the skeletal muscles. It's so rare it took doctors months to diagnose it.

"Even for the first three months, there wasn't a person at Albany Med that had seen the condition before." Father, Brendon Monk says.

Brendon and Camron's mother, Krysta Slemp also have a 2-year-old son named Jayden. For this family, it's been almost a year of learning, adjusting, and facing challenges associated with Camron's condition. While Jayden was walking at 8-months, Camron can't roll over, crawl or walk. He needs a ventilator to breathe. And 'baby products' like cribs and car seats need to be specially designed. He attends doctor appointments and therapy several times a week. Despite his condition, Krysta says Camron is making improvements in his mobility limits " and makes noises, something doctors said probably wasn't going to happen.

"He doesn't talk, but to hear this it's awesome." Krysta says as Camron gurgles with a smile. "It's the best feeling in the world."

The family does the best they can with keeping Camron healthy. MTM makes him very prone to illness, even coming down with the common cold could prove fatal. His parents want to get Camron to Boston Children's Hospital where research is being done on this very rare condition.

" A lot of the time when go to his doctor we're telling them what's going on with him." Brendon tells CBS6. "They're not telling us about his condition."

To get to Boston they're reaching out to the community for help. They've joined up with Our Community Cares, Inc. as a platform to raise money through donations. The funds will also go towards living expenses and travel costs to specialists. They're also selling support bracelets.

Krysta says the connections her family has made through the Joshua Frase Foundation have been invaluable and she shares Camron's progress with other parents whose children have the same condition.

"We just go day by day." She says, motioning to Camron. "He's our boss and we just follow what he wants."

If you'd like to help support Camron and his family, click on this link: http://ourcommunitycarescc.org/meet-c...

If you'd like to buy a t-shirt with funds going towards Camron's family, click this link: https://www.booster.com/camronsfight?...