Four-Year-Old Noble Boy To Receive $750,000 Medication

Thursday, August 3rd 2017, 6:51 pm
By: Karl Torp

A family's prayers are answered after fighting to get a life changing medication for their four-year-old son.

Kayden Chaffin has Spinal Muscular Atrophy or SMA. He can move his toes and fingers, but needs a ventilator to breath and requires a feeding tube and trach.

His mom says he is basically trapped in his own body. She was told he probably wouldn’t live to see his first birthday.

“He's got a little smirk that we've gotten back, but other than that we've lost a lot,” says Kayden’s mom Amanda Chaffin, about the deteriorating condition.

A new medication could help.

Amanda has been following the results of Spinraza, a drug made by Biogen. According to Biogen, the protein injections have helped kids who suffer from SMA.

“It’s amazing” says Amanda about the progress she has seen of SMA kids being treated with Spinraza.

However, Spinraza costs $750,000 for a year’s worth of treatment. Medicaid refused pay for Kayden’s treatments twice because he requires a ventilator and trach.

“It’s like dangling a candy bar in front of you and saying ‘oh here it is,’ but saying ‘oh you can't touch it because it’s made of gold,’” says Amanda.

Recently, Amanda got great news. Through a special program, Biogen has agreed to pay for the injections.

There are no guarantees, but for the first time in a long time there is hope for the Chaffin family.

"To know that it will be slowed down, to know that we have a possibility of regaining some strength, it's incredible,” says Amanda Chaffin.

Kayden goes to OU Children’s Hospital his first treatment on August 17th.