Musical fundraiser helps support needs of baby diagnosed with rare genetic disease

By Brittany Whitehead

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    ASHEVILLE, North Carolina (WLOS) — A local community is rallying behind a baby boy after he was diagnosed with a rare genetic disease.

Sunday, March, 10, The Orange Peel hosted ” Rockin’ for Rudy,” a musical fundraiser for a music-loving baby whose family is in need of purchasing a wheelchair-accessible van.

Rudy Johnston was diagnosed with LAMA2MD, a very rare form of congenital muscular dystrophy, which impacts the way his body makes his muscles. Rudy won’t ever be able to crawl or walk. He will also will continue to have progressing feeding and breathing difficulties as he grows.

His parents will need to spend hundreds of thousands of dollars over the next few years to provide treatment and accommodations for Rudy, but since his diagnosis, family and friends have been helping raise funds through various GoFundMe accounts.

On Sunday, local musicians hosted the first in-person fundraiser for Rudy. His father said the wheelchair-accessible van alone will cost $80,000.

“You need every bit of support,” said Sawyer Johnston, Rudy’s father. “When we first got Rudy’s diagnosis, every single text, every single phone call that came through mattered, and this is like an overwhelming… you know, if that’s a drop, than this is an ocean.” In late January, Rudy’s parents said they were able to use a portion of the funds from the GoFundMe set up for them to purchase Rudy his very first wheelchair.

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