The parents of a local child diagnosed with a rare disease confirmed to KTVB Friday evening that their insurance company has approved treatment for him.
Jeff and Piper Morse are living through a parent's worst nightmare, they're trying to help their son who was recently diagnosed with Krabbe disease.
One in 100,000 are the odds a baby will be born with Krabbe. To put that into perspective, Boise's population is a little over 214,000 people. That means only two people will be affected by this disease.
"We were devastated," said Jeff. "It's something that you always read about, you never feel like it's you or your family."
"It's your worst nightmare," said Piper.
A rare diagnosis became the grim reality for the Morse family less than two weeks ago. After a series of blood tests, Piper and Jeff found out their son, 7-month-old Grayson, has Krabbe - a progressive brain disease with a life expectancy of one to two years.
"It's like an outer-body experience when you hear that," said Piper. "It can't be real, this is not happening. You go through all the emotions, anger, sadness questioning why is this happening to you? It's so rare, I've never even heard of it, why is this happening to you? And then you go from there to - what can we do?"
There are only three hospitals in the entire country that have experience with this disease - one being the Children's Hospital of Pittsburgh. There, Dr. Maria Escolar hopes to begin treatment for Grayson through a process called "unrelated umbilical cord blood transplantation." This treatment replaces enzymes that are missing in patients with Krabbe and stops the disease from progressing, adding five to 10 years of life.
"It's not a cure but it still provides many more years of life to these children and interaction with their families," said Escolar. "They're able to keep their senses. Their vision and hearing are two huge things that obviously will make this child be able to enjoy life for many more years."
Piper told KTVB that they are heading to Pittsburgh Monday morning.
Piper and Jeff's insurance had denied coverage twice. They say the first time was because they didn't have enough information. The second time Piper says she was told the treatment was experimental.
The insurance company said Thursday that they cannot comment on this case, but did say their coverage is based on evidence-based medicine and medical-best practices. Jeff and Piper appealed.
A GoFundMe page has been set up for the family.