PRINCETON — In many ways, MaKenna DeGrush of Princeton sounds like many other 5-year-old girls.
Her favorite television show is “Austin and Ally” on the Disney channel, and her favorite book is “The Little Mermaid.” She is a huge pasta lover and loves anything by country singer Taylor Swift. In the evenings, she likes to go for walks and to go get ice cream. MaKenna is a student in the Bright Beginnings program at Douglas School, where her favorite thing is to play with her friends.
But MaKenna has some special challenges in life because she was born with spinal muscular atrophy (SMA), a motor neuron disease that causes muscle weakness and atrophy (wasting). Approximately 1 in 6,000 babies born are affected by SMA, which is linked to a genetic mutation in the SMN1 gene.
To help raise funds for MaKenna’s ongoing treatment, the Princeton Elks Lodge is partnering with Service Master Restoration to host a benefit Saturday at the Princeton Elks Lodge.
Princeton Elks Exalted Ruler Penny Best said the children/family portion of Saturday’s benefit will be from 3 to 5 p.m. and will include lots of activities and games, including a bouncy house provided by Beck Oil Co. The adult portion of the benefit will begin at 5 p.m. and will continue until enough money is raised to help with MaKenna’s expenses, Best said.
Saturday’s benefit, which has been moved to inside the Elks Lodge, will include music by the Last Call from DePue and The Generics of Princeton, along with raffles and free food, provided by the Elks Lodge. Child tickets are $5 each, and adult tickets are $15 each.
MaKenna’s mother, Ashley Manzo, of Princeton talked about her daughter’s life with SMA, the concerns and ongoing medical needs.
Manzo said MaKenna began to lose the ability to stand when she was about 8 months old, and she wasn’t interested in crawling. After months of indecision, her daughter was finally diagnosed with SMA when she was 15 months old.
Today, MaKenna can walk short distances around a room but uses a wheelchair for longer distances. In time, the family hopes to get an automatic wheelchair for her. At school, her classmates take turns wheeling MaKenna down the hallway in a stroller to her classroom.
As MaKenna is getting older, she does realize her legs are more wobbly than other children’s legs, Manzo said. She realizes she can’t do the same things other kids can do, or she can’t do them in the same way.
“We tell MaKenna that she’s fortunate for what she does have, and we try to help her understand that she can do things, but she just has to do them differently,” Manzo said.
As far as ongoing medical treatment, MaKenna sees a specialist in Madison, Wis., once a month, sometimes less frequently. She takes trial clinical medications. She’s in physical therapy at the Lighted Way facility in LaSalle.
Insurance covers some of the medical expenses but certainly not all of them, Manzo said. Everything seems to be a fight, with talk now that insurance could possibly not cover future out-patient therapy, she said.
Children with SMA depend on therapy because they are missing the gene that sends signals to the body to make protein to build muscle, Manzo said. Once they lose muscle, they are never able to regain it, she said.
On Tuesday, Best said the Elks Children Care Corporation will help every way it can to see that MaKenna has the ongoing therapy she needs. The Elks will continue their commitment to her care until she’s 21, Best said.
Looking ahead to Saturday, Best said she hopes for a good turn-out for the benefit, which they are calling “Miracle for MaKenna.”
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