HARRIS COUNTY, Ala. (WRBL) – A Harris County family is celebrating overcoming a major obstacle in treating their 8-year-old-son who has a rare form of Muscular Dystrophy, thanks to a village of supporters and a phone call from the Chief Medical Officer of a major insurance company.
8-year-old Jacob Saalman is like most kids. He loves being outdoors, riding four-wheelers, and playing baseball. This Halloween, he carved pumpkins with his family. Jacob loves his dad, a former Fort Benning Ranger, and his mom. Jacob adores his four-year-old brother, Hudson.
“Jacob is very protective of Hudson. He’s a mother hen. Oftentimes I have to tell Jacob to stop parenting,” shared Ryan and Brooke Saalman, Jacob’s parents.
However, Jacob is not like most kids when it comes to his health. Jacob’s handled more medical procedures, biopsies, and tests than many adults. It’s heartbreaking. Jacob’s mom and dad say he’s resilient with a quiet strength.
“I would say he is very strong and adaptable. All the things he has to do, all the medical stuff he has been through, pokes and prods and port placement and muscle biopsies. He has been through a lot,” said Brooke.
Jacob is very sick. So is his brother Hudson. Both boys have Duchenne Muscular Dystrophy, a rare genetic disease, preventing their bodies from making a protein called Dystrophin that protects our muscles from breaking down with use.
Jacob plays ball now. By 12, he will most likely need a wheelchair. After that, the prognosis remains bleak for the brothers and the parents who love them.
“The life expectancy is upper 20’s and into the ’30s. But you are not walking around or living a normal life. You are most likely on a ventilator and having a parent care of you 24/7,” shared Ryan.
Jacob’s medical team is convinced an FDA approved home infusion called Exondys 51 will significantly improve Jacob’s quality of life by helping him produce partial Dystrophin proteins.
“It’s not a cure. It slows the rate of the disease, and also it’s been proven to help kids walk longer, and it is also shown to improve pulmonary function, and that’s the issue later on down that causes a lot of problems and even death from this disease,” said Brooke.
The Saalmans goal is to stave off the disease for as long as possible. They believe Exondys 51 can help keep Jacob as healthy as possible until a gene therapy is ready.
“We still have hope. What gives us the most hope is there are gene therapy trials in phase three. So we are hoping within the next two or three years we will be able to have a gene therapy that will make this a much milder disease,” said Brooke.
One of Jacob’s physicians, Han C. Phan, MD, with Rare Disease Research LLC in Atlanta, Georgia, shared this statement with News 3:
“Jacob has Duchenne Muscular Dystrophy, a slowly progressive condition for which without treatment could limit his life expectancy. Every child with DMD should receive the treatment he deserves and without such could be detrimental to his overall health.”
The family says Horizon Blue Cross Blue Shield of New Jersey had twice denied Jacob Exondys 51, despite other major insurance companies approving similar patients’ treatment. The drug costs 300,000 a year. The company listed several reasons for denying coverage for the medicine in a letter sent to the Saalman family.
Ryan Saalman shared the familes heartbreak and frustration on his Facebook page earlier in the week. The status update was shared several thousand times and sent to News 3.
Monday, the Sallman family spoke with News 3 about their struggle since April to get the medication approved with their insurance company.
“It’s just frustrating to know there is a child that has this need, and we pay good money for our insurance. You think that if a doctor says this is medically necessary that they will get the medication, and that’s not the case. These kids deserve that. Everything they go through. They deserve some help,” said Brooke.
News 3 reached out to Horizon Blue Cross Blue Shield of New Jersey on Monday. Tuesday, News 3 worked with The Saalman family and Horizon BCBS of New Jersey to get the necessary medical privacy forms filled out to get information on the insurance company’s case. However, before the process was complete, The Saalman family says they got a phone call from the insurance company’s Chief Medical Officer. The family was thrilled to learn Exondys 51 has been approved for Jacob.
“Today, I think we truly saw the power of community. In this fight against Duchenne Muscular Dystrophy, it takes a village, and I think our village got really big really fast. Our new village gave an 8-year-old boy a loud enough voice that Horizon BCBS has overturned last week’s denial. Jacob will be able to get the medication he needs. The Saalman Family wants to thank the thousands of people that shared our story; we truly believe it is because of all of you that this has happened,”
The Saalman family is overjoyed. Time is not on their side as this disease doesn’t slow down. With each delay comes another day Duchenne Muscular Dystrophy robs Jacob’s muscles of their ability to function. The family hopes the newly approved infusion will be ready for Jacob within a few weeks. The treatment should help slow the disease’s progression down and give the family the time they need to wait for a promising gene therapy they pray is on the horizon.
The day before The Saalman family learned the medication had been approved, Jacob hit the winning RBI for the final game of his baseball season in a tie game with two outs. Jacob got the game ball in the final game of what may be his last season of baseball.
“And sometimes God shows up in the last game, in the last inning, with two outs and two strikes on the board, when the hope of a win is almost gone and He crushes our expectations. Man, did I ever need that reminder tonight, and maybe you do too,” shared Jacob’s father on Facebook.
For more information on Jacob and Hudson’s battle with Duchenne MD and ways you can help, you can visit their blog: Saalman Strong. The family has been encouraged to establish a GoFundMe page: Jacob and Hudson’s fight against Duchenne MD