Help us save our babies: Newborn twins fighting rare genetic disease that family says will cost $4million to treat

A couple from Kansas City are fighting to save their newborn twins that were born with a rare genetic disease that the family said will cost $4million to treat.

Baby Eli and Easton Reed were born on Easter Sunday and were diagnosed days later with Spinal Muscular Atrophy, which was discovered after doctors conducted routine testing. 

Now, the baby boys need medication that costs $2.1 million each.

New parents Amanda and Austin Reed told KCTV 19News when they learned the devastating news. She said: 'The doctors sat us down and told us that there were some very concerning labs that came back on both of our boys for Spinal Muscular Atrophy.

She added:  'It's a nightmare, an absolute nightmare.'

Eli Austin and Easton Michael were born on Easter Sunday but days later were diagnosed with a debilitating disease 

New parents Amanda and Austin Reed hold their newborns at the hospital 

SMA is a genetic disease that causes muscle weakness that can affect a child's ability to crawl, walk, sit up, and control head movements. Severe SMA can damage the muscles used for breathing and swallowing, according to KidsHealth.org.

She explained that without treatment, the life expectancy is one to two years, but there is a drug called Zolgensma, which could potentially save each of her boys' lives.

The one-dose IV drug treatment for each baby is a staggering $2.1million.

'These infants that receive that IV infusion, Zolgensma, before their symptoms start,' she said. 'Our boys' symptoms haven't started yet, studies show they're living up to normal lives.'

The new parents were hit with another blow. The day after they were born, Reed learned that her insurance from her employer Mosiac Life Care no longer covered the life-saving drug her newborns need.

When Reed spoke to the hospital, Children's Mercy, about getting treatment for her sons despite her insurance being terminated, she said the hospital denied her request.

Chief Executive Officer Mike Poore told KCTV5 in a statement about the issues they have to deal with daily regarding insurance and soaring drug prices.

The two babies were born with complications - and now their family are desperately trying to get the money for the drugs they need to live a normal life 

The new parents with their dog are racing against the clock to save their baby boys 

'Global pharmaceutical companies are putting profitability over affordability, making it impossible for employers like our hospital system to bear the financial burden of these exorbitant drug prices.

'In January 2024, Mosaic's Health Care Trustees made the gut-wrenching decision not to cover expensive gene therapy used to treat ultra-rare diseases. 

'Covering these treatments could cripple the financial viability of our health system, directly impacting our more than 4,000 employees and the approximately 270,000 people who rely on the health care we provide in small communities across four states.

He said: 'We are working hard to help find alternative solutions and financial resources to help in this case.

He added: 'Bottom line: the families should not have to focus on the astronomical costs imposed by drug companies, but instead should be able to focus on the care of their children in a medical crisis.'

Reed's stepsister Kecia Van Hoft set up a GoFundMe to help raise money to help save her family member's newborns.

On Saturday, she gave an update sharing that collected evidence for their appeal was submitted to the board of trustees where Amanda works. 

An emergency meeting was called to review all of the information to decide whether or not they will allow their insurance to cover the gene therapy her babies need, but said that after the board met they denied the appeal.

'Amanda and Austin are devastated and are at a loss to figure out how to pay for the treatment their children need,' she said. 

She asked for prayers and said that any donation will help as they continue to try and figure out how to pay millions of dollars for this life-saving medicine.

As of Wednesday morning, more nearly seven million people have donated and more than $260,000 has been raised towards their goal of $4.2million.