There are over 30 subtypes of congenital muscular dystrophy (CMD), or muscular dystrophies that are present at birth. These rare genetic disorders often manifest in hypotonia (low muscle tone) and muscle weakness that become present within the first few months of life.
When parents Sawyer and Serena learned that their son Rudy had a form of CMD called LAMA2-related muscular dystrophy (LAMA2-MD), they were stunned. Cure CMD, a nonprofit organization which aims to advance research and treatments for congenital muscular dystrophy, explains:
“LAMA2-MD is the result of two genetic mutations that cause complete or partial deficiency in the production of the laminin 211 (merosin) protein. Affected individuals are characterized by muscle weakness, joint contractures, facial weakness, white matter changes, and sometimes seizures.”
As he grows older, Rudy may experience progressive breathing, feeding, and mobility difficulties.
Although the prospect was overwhelming, Serena and Sawyer refused to let themselves think negatively. They knew that they would try as hard as they could to support their son.
Thankfully, their community rallied behind them as well.
Rockin’ for Rudy: A LAMA2-MD Fundraiser
Brittany Whitehead reports in WPDE 15 News that the Asheville community has given all that it can to support Sawyer, Serena, and Rudy on their pathway.
In early March 2024, The Orange Peel, one of Asheville’s premier live music venues, hosted “Rockin’ for Rudy.” During the event, musicians from around the area hosted a rocking, music-filled fundraiser to support the family. Currently, Sawyer and Serena are working to purchase a wheelchair-accessible van for their son. Shares a GoFundMe for the family:
“Within the next three years, several projects and expenses need to be addressed in order to care for [Rudy] fully. These include, but are not limited to: a wheelchair accessible bedroom/bathroom (approx. $15,000), a full size wheelchair van (approx. $65,000), ramp renovations to enter Rudy’s home (quoted at $5,500), and yearly medical expenses (ranging from $10,000-16,000).”
While Rockin’ with Rudy was successful, there are still many medical, travel, and family expenses that the family will require in the future. If you would like to donate to the family, you may do so via here.
