TLG’s Jason Alexander is actively involved with Cure SMA and recently met with the Arkansas Governor to sign into law that every newborn in the Natural State will be screened for SMA at birth.
Learning something is wrong with your child is a parent’s worst nightmare, but having hope can inspire action and shine a light on possibilities.
The Larson Group’s Fleet Manager for customer PAM Transport, Jason Alexander, learned of his daughter Maggie’s disease only 15 months after she was born.
Spinal muscular atrophy (SMA). Incurable and the number one killer in infants.
The news was even more devastating when he and his wife, Kelly, found there was no cure or treatment. At least there wasn’t at the time.
For almost a year, Maggie was a normal, happy baby. But eventually her parents noticed development issues, like only being able to Army crawl instead of walk. And soon after, not even having the strength to do that.
Finally seeing a professional neurologist after months of waiting, Maggie was tested for SMA. And several weeks later, after back-and-forth discussions and plenty of patience, it was confirmed Maggie has SMA Type II.
“We were also told there was no cure – not even a treatment – and that over time Maggie would gradually get worse until one day she would barely be able to move,” Kelly explained. “It’s a day I will never forget.”
Bringing Awareness To Arkansas
One of the first things Jason and Kelly did after their daughter was diagnosed was get in touch with Meredith and Patrick Woodruff, founders of the Miller McNeil Woodruff Foundation, which raises awareness, funds research and offers support to families who are faced with the challenge of SMA.
Meredith and Patrick’s son, Miller, passed away with SMA Type I only 87 days after he was diagnosed.
Both Rogers, Arkansas-based, the Alexanders leaned heavily on the Millers for advice and support. A friendship was formed.
“They’ve really helped us on this entire path we’ve been on,” Jason spoke of the Millers. “They even bought Maggie a Goldendoodle for Christmas one year.”
On top of that local support, getting in touch with the well-known nonprofit organization Cure SMA, dedicated to the cure and treatment of the disease, was one of the first actions taken on their checklist. Meeting with affected families and medical professionals from all over the world, the Alexanders quickly discovered there was no Cure SMA chapter in Arkansas.
It didn’t take long for Jason and Kelly, along with other couples and families in the Greater Little Rock area, to develop and lead Arkansas’ first Cure SMA chapter in 2016.
“We help do fundraisers, like the Walk-And-Roll, and events to get SMA families together,” said Kelly.
Like the Millers were to them, the Alexanders are now key contacts for newly diagnosed families in the Natural State.
“We know how hard and scary it was when Maggie was first diagnosed and want to be able to support families in any way we can,” Kelly said. “Even if it’s just someone to talk to, answer questions or give advice. Maggie met her best friend Bella from one of the conferences and even though she lives in Little Rock, they FaceTime and mail letters. Anything they can do to keep in touch.”
The Alexanders also recently met with Arkansas Governor Asa Hutchinson to sign into law that every newborn in Arkansas will be screened for SMA at birth.
In a press release Hutchinson said that after the bill was signed, “[The children] made history as the first children to race wheelchairs inside the Governor’s Conference Room. The children didn’t know it, but their laughter was like a big thank you to the parents and legislators who guided this bill to my desk. They reminded us that we can make life better for others.”
Dealing With It
Today, Maggie is an outgoing six-year-old who loves to sing, dance, color and play. But she faces challenges in being able to do all the things that she loves.
One of the biggest challenges Maggie and other children battling SMA face is having the right wheelchair and transportation as they grow. SMA also takes a toll on family members. Kelly and Jason, like many parents dealing with SMA, struggle with making their home wheelchair-friendly.
Maggie also has a big brother, Landon. Kelly and Jason say while he would never say anything, a lot of attention is taken away from Landon since Maggie requires so much help.
“It has changed our family and life in so many ways,” says Kelly. “It’s hard and we fight every day to make Maggie and our lives as normal as we can. We will continue to fight and do the best we can for our kids.”
Jason added, “We always treat Maggie like everyone else. We don’t treat her differently. When she is at school, she comes home and says ‘Mom, Dad, we got to run laps today!’ She does it the same as everyone else just in her own way.”
Maggie Alexander surrounded by brother Landon, left, mother Kelly, center, and father Jason, right.
Being so involved with Cure SMA, the family went from having no available treatments to the world’s first-ever in just a few years. Spinraza was approved by the FDA in 2016, which can change the expected course of SMA for some individuals, increasing survival, motor milestone achievement, and motor function.
Unfortunately, Maggie had too much nerve damage by the time she started the treatment. But the Alexanders remain hopeful that Spinraza will help at least stop the disease progression.
Recent Cure SMA Fundraiser
General manager at Peterbilt of Fort Smith, Rick Sanders, heard about his employee’s daughter’s incurable disease and has taken action to help.
“We’re always looking for opportunities to be involved with our communities,” Sanders explained. “And when a hardworking employee shares his story of his family’s struggle with something that cannot be conquered, your heart goes out to them.”
That’s why his team joined forces with Cure SMA. The dealership recently sponsored Cure SMA’s 2nd annual Arkansas Walk-N-Roll in Little Rock to raise money for a solution in curing the disease and providing support to families.
A total of $9,147.69 was raised (and counting), according to Cure SMA’s Senior Coordinator Brittany Richter.
“We also had a great number of onsite registrations bringing our total to 113 participants,” said Richter. “It was a really great day with an awesome amount of growth and I know that we will do even more next year.”
Even though the event is over, donations to Jason and Kelly’s Cure SMA chapter can be made directly through the organization’s website.
#Heroes4Maggie on Facebook
For updates on Maggie, SMA discoveries and disease progress, you can follow the family’s Facebook page. Donations can also be made directly to their ongoing campaign #Heroes4Maggie campaign.
Cure SMA fundraiser Walk-And-Roll in Little Rock, Arkansas May 18, 2019.