- Julie Chang American-Statesman Staff
Haji Mada, 9, was all smiles as his sister wheeled him out of his East Austin apartment Thursday. He was about to try out his new electric wheelchair and taste freedom he had lost when he stopped walking more than a year ago.
“Look at what we’ve got for you,” said Britt Sitzes of National Seating & Mobility, which helped retrofit the wheelchair for Haji.
“Yes!” Haji said in a rare moment of speaking.
Haji and his family are part of the Statesman Season for Caring campaign, which features the stories of a dozen Central Texas families and helps hundreds of other families through local nonprofit agencies. His family was nominated by Caritas of Austin.
Haji has a rare form of muscular dystrophy that has taken away his ability to stand, walk, run and play with his sisters and his peers. Doctors in the Kenyan refugee camp where he was born did not know what disorder he had, and it was only after resettling in Austin about a year ago that his mother, Hawa Hassan, finally had answers.
It’s not clear how Haji’s condition will progress in the years to come. Hassan said her brother had a similar condition and did not live past the age of 25.
In the meantime, Hassan wants Haji to enjoy his childhood as much as he can. Through a translator, Hassan said the electric wheelchair means Haji won’t have to rely on someone else to push him around anymore, and he won’t have to crawl around on the floor as much. Before Haji received the electric wheelchair, Hassan had wanted thicker rugs for their apartment floors so that crawling wouldn’t be so hard on Haji’s knees.
“He’s very excited. He’s going to look like his classmates,” Hassan said.
Sitzes said the family of a man who had died from amyotrophic lateral sclerosis or Lou Gehrig’s disease had wanted to donate his electric wheelchair to Haji, and when Sitzes called the chair’s manufacturer Quantum Rehab, a representative there, Cary White, offered to donate one that would be the right size for Haji.
Sitzes said that Haji can grow into the chair for the next four or five years. Sitzes will make adjustments for Haji throughout the process.
“He’s now stuck with me,” Sitzes said. Last year, Sitzes got a chair for Terry Markland, a Season for Caring participant who had been in an accident 30 years ago and damaged his ankles. This year, Sitzes is also helping another Season for Caring recipient, Marcelo Gracia, who has ALS, get a power chair.
Within an hour of receiving the electric wheelchair, Haji was already tinkering with the joystick that controls the chair and was zipping in and out of his apartment. He probably will still need some finessing to avoid running into walls and furniture in his apartment, but Sitzes said Haji will have no problem adapting.
“I’ve done thousands of chairs for adults and kids, and he’s awesome,” Sitzes said.
Haji and his family still have needs, including a wheelchair-accessible van, physical therapy for Haji, furniture, bedding, art supplies, school supplies, children’s books, children’s clothing and baby furniture for a new baby on the way.
To find out more about the Hassan family or to donate something on its wish list, contact Caritas of Austin, 512-646-1277, caritasofaustin.org.