Mark had known since he was 12 years old that something wasn’t right. On the basketball court, he wasn’t as fast as he used to be. As Mark became weaker, he was tested for progressive neuromuscular diseases. Through spinal taps and endless evaluations, doctors were unable to provide a true diagnosis.
In 2018, a neurologist at Shands suggested he may have a rare disease called Spinal Muscular Atrophy (SMA) and ordered a genetic test to confirm the diagnosis. When the blood test results came back, it was confirmed. Mark had SMA; an extremely rare, inherited progressive disease. There were no treatments for SMA until 2017 when the drug Spinraza was approved by the FDA. The drug must be injected into the spine, so few facilities are willing to do the procedure. If Mark wanted to seek this expensive treatment, he would need to travel to Gainesville for the rest of his life.
Meanwhile, Mark’s wife, Wendy was employed and worked in the Microbiology lab at AdventHealth Orlando. Wendy questioned the need to go to Gainesville and thought, “Why do we have to travel to Gainesville when I work at one of the largest hospitals in Florida, just minutes from where we live?”
Wendy got to work contacting the pharmacy, medicare billing, radiology, and physical therapy departments here at AdventHealth. She even called the drug company that produces Spinraza, called Biogen. After five months of meetings and finally finding a doctor who was willing to do the procedure, the administration of Spinraza was finally approved at AdventHealth.
Wendy and Mark were so happy and relieved, but the cost of this treatment still seemed to loom over them like a dark cloud. The couple struggles to find any organization that would help them with expenses because SMA is so rare. Wendy knew the insurance and out-of-pocket costs would be considerable. After inquiring about patient assistance at AdventHealth, Wendy learned of the Hope Fund. Through the 1908 Society, AdventHealth's employee giving program, Wendy had assistance for her husband's medical bills. This fund allows employees to support their co-workers during a time of need. She applied to the Hope Fund and within a week received the call that she had been approved.
“I am so very grateful that we are receiving help and that AdventHealth has a program like this for its employees. This will help tremendously as Mark and I go through what we hope will be a life changing journey.”
