After Oswego resident Mandy Null, a mother of three, became engaged, she made several attempts to make official wedding plans.
Each time her plans got waylaid, but when she does get married, Null hopes that her son Josiah can walk her down the aisle.
At only 6 years old, Josiah Null, now 12, was diagnosed with Duchenne’s muscular dystrophy, a debilitating disease.
Before his diagnosis, Mandy Null noticed signs much earlier that “as a mom something was just not right.” Josiah didn’t walk until he was 2, and when he did begin to walk, he fell constantly, she said.
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Finally getting a doctor’s attention, Null said a 12-week wait for the results of a blood test confirmed her fears.
By age 12, Null said, most boys with the disease have lost the ability to walk.
Although Josiah still can walk, she said he often falls either because his legs give out or he trips, she added.
“We want him to get exercise and continue to use his muscles, but he tires easily, which causes him to fall,” Null said.
“I hold his hand wherever we go,” she added.
But in other ways, Null said, her son is pretty similar to most boys his age — interested in Xbox, Legos and girls.
Last year alone, Josiah suffered three concussions and fractured his back. Since Josiah had fallen at school, this year Null has chosen to home-school Josiah and her 7-year-old daughter to lessen the risk of accidents and has put her plans on attending nursing school on hold. A 16-year-old daughter attends public high school.
“It is tough when you have a disabled child on the other kids,” Null added. “But we do great together as a team.”
Josiah’s dad moved out of state a couple of years ago.
Also, when Josiah did attend school, Null said, he was teased because he couldn’t keep up with the other kids.
For walking longer distances or when Josiah is tired, he uses a wheelchair. To fit in Null’s vehicle, the wheelchair must be disassembled.
Getting Josiah in and out of the car is especially problematic, Null said. Now that Josiah is getting bigger, it has become harder for Null to assist him, and she has injured herself helping him.
Going anywhere is very difficult, Null said.
“But we do. We are always at the doctor — right now Josiah has 14 different doctors,” she said.
Every eight to 12 weeks, Josiah participates in a drug study. While the drug isn’t a cure, it may slow the progression of the disease.
Null’s cousin, Emily Guerrero, an Oswego mom of two, along with other family members encouraged her to start a GoFundMe page to raise $30,000 to purchase a used wheelchair-accessible van.
Her extended family also has helped plan the upcoming Wheels for Josiah fundraiser to raise money to purchase the van. The fundraiser will feature a chili cook-off, music, raffles, food and games.
Guerrero said Null first tried to save up for the van herself, but once she stopped working to take care of Josiah, it became difficult to raise the large amount needed to purchase the van.
Guerrero said for Null to have a wheelchair-accessible van to take Josiah to his doctor’s appointments safety would be very beneficial.
Cathy Janek is a freelance reporter for The Beacon-News.
Wheels for Josiah fundraiser
When: 4 p.m. to midnight, Nov. 7
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Where: Kickers Club, 1015 Harvey Road, Oswego
Information: www.gofundme.com/teamjosiah