To the naked eye, it may appear as if there is nothing pretty about having muscular dystrophy — a genetic muscle disease that over time, causes weakness, decreases mobility and inhibits respiratory function.
Twenty seven-year-old Janiqua Williams, however, is “sitting pretty,” as her playful social media handle describes, and living with muscular dystrophy.
Like most young girls, Williams was playful, fun and energetic before she lost her ability to walk.
She started off elementary school at O’Bannon, but continued at Trigg Elementary. Second grade was when Williams got her first wheelchair.
“I’ve got a lot of good memories of me walking and playing around, but I still had my wheelchair,” she recalled. “It was kind of difficult sometimes to walk because of muscular dystrophy and sometimes I had to hold on to my friends’ shoulders and they’d help out around the school and help me walk to lunch and all that.”
Williams remembered as she started getting older, she was still walking, but she had her wheelchair to assist with getting around more because it became progressively harder for her body to keep up.
In 2005, at the age of 11, Williams caught pneumonia.
“By me having MD, my immune system wasn’t strong enough to fight back. The only memory I really had is that I was really sick,” she said.
After tireless care from her mother and grandmother and countless visits to hospitals locally and in Jackson, it was discovered Williams had respiratory failure and she eventually slipped into a coma.
“That night, they raced me to Memphis, Tennessee, where I was admitted to Le Bonheur Children’s Hospital … as time passed, doctors were trying to stabilize my breathing,” Williams said.
Miraculously, Williams woke up from her coma but had to undergo an operation in which doctors inserted a trach, or tube in her airway, to help her breathe.
The experience unfortunately made her bones even more feeble and resulted in her losing her ability to walk completely.
Muscular dystrophies are rare, with little data on how many people are affected.
“The most difficult thing is even though you’re living with it, you have to get used to the changes,” Williams said. “Over the years, you get a little weaker and can hardly do stuff like you used to.”
She pointed out how for a time, she was able to do without her ventilator and would only use it while she slept.
But over the years, she has gotten somewhat weaker and has to use it permanently.
“That’s the only bad thing — getting weaker and tired,” Williams said.
The great thing?
Having a family who is and has been behind her every step of the way.
“They’re the people that keep me going,” she said.
Williams said her younger sister, 23-year-old Jatavia, is her partner in crime.
“She helps me out with everything,” Williams said with a smile.
Cordario, 29, is Williams’ older brother and her “first best friend.”
“We grew up together and he’s always helped me out so it was a big thing for him to see me transition through life … he was used to me walking all of the time,” she said.
The best thing?
Williams has a passion for art that supersedes any adversity or misfortune she has or may encounter.
“Even though I have MD, I don’t let it stop me,” she said.
September is Muscular Dystrophy Awareness Month, and Williams, who is a painter and brand builder who aspires to be an entrepreneur, uses her creativity to spread more awareness about muscular dystrophy.
“This shirt I have on represents that. Designs on Wheels — it’s my brand and it’s about spreading awareness,” she said, noting several people have patronized her.
Since she was a little girl, being an artist has been Williams’ goal.
“I’m known for art. I do canvases for people and I’ve always dreamed of having my own art gallery to sell my artwork and my T-shirts like the one I have on,” she gleamed. “I just want to show people, especially black females that are disabled, that they can be successful and they can be great too.”
Williams said musical artists like Kendrick Lamar and J. Cole are examples of creatives who motivate her.
“Their music reminds me to never let anything stop you from living out your dreams or living life. Even though I have a muscle disease, some days it’s hard but I just still push through,” she said.
She added that she wants people who may have a disability or are just faced with adversity in general to know that they can still do anything they set their mind to.
“You can be a great person even if you think you’re not ... We all go through struggles sometimes but we can get through it,” she said. “Never let nothing stop you whether you have cancer, lupus or any type of muscle disease out there. You still can live life to the fullest and to your ability.”
