FERRIER FILES: Family fights for million-dollar cure for 10-year-old Tennessee boy
NASHVILLE, Tenn. —
'Orphan Disease' is a cruel term for a cruel situation and a tough reality for one middle Tennessee family fighting for their son's life.
The term is used a when a disease is so rare that no pharmaceutical company is interested in funding a cure.
Case Hogan suffers from Hunter Syndrome, an orphan disease. The 10-year-old Thompson Station boy does not produce an essential enzyme.
There are just 500 boys in all of the United States with Hunter Syndrome. The disease only affects boys, who are only expected to live to their early teens.
“The disease can cause them to lose the ability to talk, walk, even feed themselves," Chris Hogan said. "It’s one of those things that is heartbreaking. What do you do to try to save your child?"
Chris and Melissa Hogan have three boys. They have a great marriage and great careers.
Chris is a financial guru, who writes books and works with Dave Ramsey. Melissa was a corporate lawyer, who specialized in mergers and acquisitions.
When Case was diagnosed with Hunter Syndrome at age 2, everything changed. Melissa Hogan now runs Project Alive.
“You feel like you are running against the clock because you watch these kids lose their abilities so slow," Melissa Hogan said. "Then one day they never say Mommy again."
The Hogans were able to get a case in a drug trial at Vanderbilt.
The trial has stabilized Case. Many boys his age are already in a wheelchair, some with breathing tubes and shunts.
His family said there is a hope in a gene therapy breakthrough. The problem is the gene therapy costs $2.5 million. With a rare disease, there is no profit so no drug company is willing to finance it.
The Hogans have turned to old-fashioned grass roots fundraising to save their son. This drug is so promising in the animal model that it is a cure.
“The first few years it was rough," Chris Hogan said. "You have to acknowledge all the dreams are going away. To grow up and and play sports and have a life, hard look some of those things. But then you shake yourself and focus. He is here now what are we going to do to fight for him."
The family says the answer is anything and everything because they can let go of sports and college, even marriage and grandkids, but not their boy.
With help, the Hogans have helped raise $532,564, but they need 2.5 million dollars for the cure.
Anyone wishing to help out the family can donate on Project Alive's website.