Local parents of twins with medical condition ‘feeling more confident’

By NewsPress Now

A local couple shared a message of positivity Wednesday night regarding the needed treatment for their newborn twins with a rare medical condition.

Austin and Amanda Reed and their family have been posting on social media calling for help after their newborn twin sons, Easton and Eli, were diagnosed with spinal muscular atrophy, a genetic disease that impacts the nervous system.

While there is no cure, gene therapies can help, but they come with a hefty price tag. The family cited in the GoFundMe that the one-time infusion can cost between $1 million and $2.1 million for each child.

Their story garnered national attention, leading to nearly $400,000 in donations to their GoFundMe page. As of Wednesday, Amanda Reed announced on Facebook that they are suspending donations. 

“Because Eli and Easton’s journey has been spread near and far, we are feeling more confident that our boys will be able to receive the life altering treatment they need,” she wrote. “It has taken a village to get this far. We would like (to) thank every person, company, foundation and organization for their part in helping to save our boys’ lives.

“At this time, we have decided to stop the GoFundMe with the great hope that the boys will be able to receive the medication soon.”

Mosaic Life Care’s CEO Mike Poore offered a statement Monday, expressing frustration that life-saving treatments can come at a serious price.

News-Press NOW has reached out to hear from the family and Mosaic Life Care for an update.