Bradford’s Big Texas BBQ makes donation to Chiari Warrior (5 photos)

Owner Ricky Brooks of Bradford’s Big Texas Barbeque donated $5 from the sale of every Full Rack Rib Dinner sold last weekend towards the fight against Chiari Malformation; a condition in which brain tissue extends into the spinal canal.  

Brooks reached out to his long-time friend Jennifer Donkin who organizes an annual “Walk for Chiari” fundraiser and offered to help raise money since the walk had to be cancelled this year due to Covid.

This year would have marked the fundraiser’s fourth annual “Walk for Chiari” which raises funds for Chiari research at SickKids Hospital and is usually hosted outside the BWG Leisure Centre.

Donkin’s son, Mason, suffers from the neurological condition and is a “health care warrior” in the community. Mason appears in commercials for SickKids and was on a billboard campaign by SouthLake Hospital.

“I have known Jenn for a few years now and she wanted our mini-donut and food truck to come out to her Chiari walk fundraiser,” explains Brooks. “[Instead] for every Full Rack Rib Dinner sold, we donated $5 per meal… Mason is a warrior and a hero in our town and we thought we should help in his fight along with SickKids to raise both money and awareness for Chiari Malformation."

Despite the cold and rainy weather, the barbeque food truck sold enough rib dinners to collect $340 towards Mason’s cause.

“Mason looks forward to these events every year,” notes his mother Jennifer. “He gets to meet other families dealing with Chiari and speak to other kids who have [the condition]”.

On Wednesday evening, Brooks presented Mason and his mother with the money raised as well as a free bubble tea (Mason’s favorite).

“Mason’s first time out anywhere was there (Big Texas BBQ),” notes Donkin. “He listened to a live band in a heated tent, ate food and enjoyed listening to the music."

Eight-year-old Mason was born with the condition but was misdiagnosed for the first several years. Donkin explains that because his tonsils are not big enough to contain CF (cerebrospinal fluid), it leaks down the back of his head into his spine, causing an array of symptoms and problems.

“It’s one of the most under-funded, un-researched diagnosis,” explains Donkin. “He had a lot of GI (gastrointestinal) issues, bio-rectal exams, stomach flushes, and saw multiple doctors over the years, but everything kept coming back normal."

Mason was finally sent to a neurologist in 2015 who did a MRI and discovered he had Chiari inflammation. With this diagnosis, Donkin and her son learned several of his other symptoms were connected to the condition, including a rare genetic disorder called “Ehlers-Danlos”; a disease that weakens the connective tissues in the body.

“He’s like Elastigirl," explains Donkin, comparing Mason’s stretchy limbs to the fictional character from The Incredibles movie. “His arms and legs pop out of their sockets easily, [but] he doesn’t feel what we feel – no screaming or pain because his limbs are extra stretchy."

Mason wears ankle bracelets to help him walk due to poor muscle tone and cannot participate in sports like most kids. On top of this disease, he also has neurogenic bladder which disables his ability to get the “signal” to urinate.

“He’s a pretty happy boy,” shares Donkin. “He loves music and plays the piano at the Bradford Academy of Music. He wanted to play the drums but wasn’t able to keep up the strength so went back to piano."

Mason loves to spread awareness for Chiari and does not want anyone to suffer. He participates in another fundraiser called “Get Loud” presented by SickKids where the Donkins have raised $3,000 towards the campaign.

“Because Chiari is so complex, not everyone has the same symptoms or degrees,” states Donkin. “There’s no cure, only brain surgery to remove a piece of the skull to allow draining of CF."

Donkin adds that unfortunately Mason is not a candidate right now for this surgery due to other issues they must work through first. Added risks with the surgery also include the possibility of losing 50 percent of his neck ability.

“We’re trying to weigh out options right now” shares Donkin. “He’s a true fighter [and] has gone through some pretty invasive tests and comes through stronger than I. It’s hard to know what to expect and what will happen, but he always comes out smiling every time."

“We are so blessed to live in Bradford," adds Donkin. “The support we get in this town is so special."

To learn more about Chiari Malformation visit: www.chiari.ca

To donate toward Mason’s cause, contact Jennifer Donkin: [email protected]