Joshua Engberg and Reese Crabtree were high school sweethearts who married shortly after graduating because Joshua was entering the military. They were excited to begin their life together as a young military couple. The plan was to wait to have children, but that changed when they found out they were expecting.
At the time, Joshua was stationed in North Carolina, so that is where the birth of their baby boy, Mark, took place. The couple was in baby bliss, celebrating their adorable new bundle of joy. Unfortunately, their happiness was quickly accompanied by worry and fear.
Mark was the first baby to receive a newborn screening for Spinal Muscular Atrophy (SMA) in North Carolina. SMA is a genetic disease affecting the central and peripheral nervous systems and voluntary muscle movement. The condition is often called “floppy baby syndrome” because it weakens the muscles closest to the center of the body (back, shoulders, hips, and thighs). SMA also affects breathing and swallowing, so that was an immediate concern. Mark was born on June 12th, 2021, and by June 22nd, he had a formal diagnosis.
“We are young parents anyway. Mark was our first child, so hearing the news of his diagnosis was devastating and traumatic,” Reese recalls.
While the news was hard to take, receiving the information so early in Mark’s life was a blessing. The family and team of physicians could get busy with treatment right away, which has been imperative to Mark’s progress. The couple also felt fortunate to be part of the military because the benefits gave them opportunities for treatments that they would not have been able to afford otherwise.
“I like to call Mark my two-and-a-half-million-dollar baby because we were able to get a treatment that cost that much,” Reese said. “We are so thankful to have the coverage that we did, but it pains me to think of the families who are not as fortunate,” she added.
The family is now living in Marion, Ohio, and enrolled in the Marion County Board of Developmental Disabilities (MCBDD) and Help Me Grow Early Intervention (EI) program. Through EI, Mark is receiving therapies of all kinds and crushing milestones. He is also seeing a string of specialists who are providing the family with assistance to help Mark succeed. Reese said Nationwide Children’s Hospital is one of the leading hospitals for SMA and has been a fantastic support for their family.
“The therapies and doctors’ visits can be overwhelming. As a result, I had to quit my job and make Mark’s care my full-time career. It’s one I certainly wouldn’t trade. Still, it can be hard to manage in many ways – financially, emotionally, and with the investment of time,” Reese said.
Mark is almost two, and the couple feels they have come a long way since the news of Mark’s diagnosis. They are a great team. Reese happily reported that she can eat a warm meal occasionally now. But, of course, they do still have plenty of worries.
SMA is unpredictable and can worsen as Mark ages. Since the disease is genetic, they are concerned with having additional children. Reese’s siblings could also be carriers, so that is a worry for her extended family.
When asked what her wish is for Mark, Reese said, “I just don’t want this to hold him back. I want him to be as typical as possible and do the things kids should get to do in life.”
“Early Intervention has been fantastic. We were looped in before moving from North Carolina, so we never missed a beat. We have found that Ohio has many resources for us to tap into,” mom said. Our biggest hiccup has been the financial burden. Trying to get Mark on Medicaid has been a long and frustrating process. The bills don’t stop just because the process is slow and hard to navigate,” she adds.
Mark will likely be a candidate for services at the Marion County Board of Developmental Disabilities throughout his life. The organization is excited to support this family and see Mark reach each precious milestone during his journey.
March is Developmental Disability Awareness Month. The Marion County Board is proud to tell the stories of those served, their successes, and their challenges to better inform the community of the role MCBDD plays in Marion County.