A fundraising breakfast is in the works for Kayla Pool of House Springs and her two sons, Damien Doyle and Logan Bowman, who are battling Duchenne muscular dystrophy.
Damien is 11 and Logan is 5.
The fundraiser will be held from 7 a.m. to 2 p.m. on Saturday, Oct. 28, at Hometown Cafe, 14 Gravois Station Road, in House Springs. Funds raised from donations, tips and a percentage of sales from the breakfast will benefit the family, which will use them to help pay for medical needs. The fundraiser also will include a silent auction, a basket raffle, 50/50 drawing and more.
According to the Muscular Dystrophy Association, the signs of DMD often appear before boys reach the age of 6 and include progressive muscle weakness and atrophy; enlarged calf muscles; fatigue; toe walking; difficulty climbing up stairs and running; frequent falls; breathing problems; developmental delays; and short height.
Kayla Pool, 31, also has a daughter, Riley Bowman, 7.
Pool said Damien was diagnosed with DMD at age 4 after she noticed he was walking slowly, was falling often and was experiencing learning delays.
Following Doyle’s diagnosis, Pool had amniocentesis performed while pregnant with Logan and received his diagnosis before he was born.
She said Logan has not had a significant onset of symptoms yet.
Pool said the fundraiser organizers hope the breakfast brings in $10,000, which would pay for a medical wheelchair lift that would enable Damien to get inside the family’s home independently.
She said independence is very important to him.
“He likes to try to show off how he’s independent and doesn’t need anybody, but in reality, he does. He has a hard time getting on and off the school bus and stuff,” Pool said.
She said Damien uses a wheelchair all day at school but can still walk inside their home, although he can’t play outside.
Pool said he loves to play Fortnite, an online video game.
According to the National Institute of Health, DMD is not only one of the most severe forms of inherited muscular dystrophies but also the most common hereditary neuromuscular disease. It almost exclusively affects boys and occurs in approximately 1 in 5,000 male births.
The disease causes a mutation in the gene needed to make the protein dystrophin, which stabilizes and protects muscle. Without enough dystrophin, muscle cells throughout the body become damaged and replaced by scar tissue, which leads to progressive muscle fiber degeneration and weakness. Over time, patients are unable to carry out typical daily activities and must use wheelchairs, most by the age of 10-12.
The disease has a poor prognosis, with most patients developing cardiomyopathy symptoms in their teen years and dying in their twenties due to respiratory muscle weakness or cardiomyopathy.
There currently is no cure nor any treatment that halts the progression of the disease. Current treatments only relieve symptoms.
Pool said anyone willing to donate a basket or cash for the fundraiser may take them to Hometown Cafe or reach out to her at 636-551-0868.