The McDonald Family
When Reese McDonald of Brandon grows up, he probably won’t be able to remember a time when he wasn’t using a wheelchair. At only 17 months, he can’t even speak yet but has no problems wheeling around in a pushchair barely a yard tall.
Reese has Spinal Muscular Atrophy type II, which causes muscle weakness that progresses with age.
Before he was diagnosed with the disease, his parents, Matt and Cortney, were already familiar with it. Reese’s older cousin, Evie, also has SMA II and will turn 4 soon.
When Jeff and Dee Horton, Evie’s parents, received their daughter’s diagnosis, they were clueless about the disease.
“When Dee and Jeff found out, we had never heard of it, and we didn’t know what it was,” Matt said. “We had no idea. We just really were taken back.”
Since Evie was always shy and didn’t allow many people besides her parents to hold her, Matt said he was not immediately aware of how much SMA was affecting her.
“I picked her up one day at church, and I actually bent over to do something for one of my children. And I didn’t have support on her back, and she just fell over, almost out of my arms,” Matt said. “That day it just kind of really hit home with me how weak that she is and exactly what this disease was doing to her.”
Soon after Evie’s diagnosis, Matt’s brother-in-law Jeff started his own organization, Stop SMA, to help raise awareness and funds toward treatments and a cure for his daughter’s disease. He asked Matt to be on the board of directors, not knowing Reese would soon be diagnosed with SMA also.
“I knew how much he cared about Evie, and I knew he would do anything to help the cause,” Jeff said. “I was looking for people who would be passionate about the cause, and Matt’s just got a good personality.”
But Matt’s stake in the cause significantly doubled about six months later.
Before the first Stop SMA board meeting, doctors informed Matt and Cortney that their own child had SMA as well.
Before Reese, Matt and Cortney had three healthy children — Avery, Zach and Millie Grace. In the eyes of everyone around them, they were the picture perfect family. Having a child with the same condition as Evie was not on their radar.
“Your initial thought, you think, OK, there goes my perfect family,” Matt said. “But in all actuality, it still is a perfect family, because that’s the way God intended it to be. Reese is just an absolute joy to be around.”
Contrary to what some people think, Matt said having a child with SMA II has not been a burden on the family. The McDonald family does everything a typical family would do. Although Reese may not ever be able to play sports, he enjoys going to physical therapy where he practices sitting up and rolling over by himself and is so far healthy.
And like all little toddlers, Reese is perfectly able to get into trouble and his parents still have to watch him. Not long ago, he got his first wheelchair, which opened up his whole world. Now he can interact more with other children, get into kitchen cabinets and roll out the toilet paper.
Reese’s mom, a surgeon tech, stays at home with the children and takes calls at night and on the weekends. Her faith in God and a support system of family and friends is especially important to her. As a stay-at-home mom, she said a large part of taking care of Reese on a daily basis is new to her.
Since Jeff and Dee had a child with SMA first, their experience enabled them to make things easier for Matt and Cortney when Reese was diagnosed.
“If it had come first with us, I would be sitting there with my thumb in my mouth not knowing what to do,” Cortney said.
Matt said, unlike Jeff, he would have never thought about starting his own organization to fight SMA had Reese been born first.
“It was still a shock, but at the same time, it was so much easier because we knew what we were dealing with,” Matt said.
He said Jeff has taken on the challenge full-force, and Matt feels fortunate to be a part of it.
In fact, if any treatments or a cure is discovered soon, Reese and Evie would greatly benefit, since they are young enough to significantly rehabilitate.
When StopSMA launched, one of its first objectives was to help fund research for the development of a groundbreaking drug called Quinazoline, the first pharmaceutical compound produced specifically for SMA. The drug increases the production of a protein that people with SMA lack.
Matt said a drug company has picked up the project, allowing Stop SMA to focus on other types of treatments as well.
However, Quinazoline may be the most promising, at least in the short term. The drug is now ready for human trials, which Jeff said doesn’t happen every day. “Where we are right now is freaking monumental,” he said.
Matt and Cortney hope treatments will be found soon so that perhaps their son will one day be able to take his first step. Research has been able to promise more in recent years, and the next five to ten years may be even more groundbreaking if enough people support what Jeff calls simply “the cause.”
Although Reese enjoys using his small wheelchair and going to physical therapy once a week, with enough support to fund SMA research, both could eventually be a matter of the past.