By Adam Prudhomme
Sierra Punchard is on a mission to raise awareness for chiari malformation, and to ensure no child has to endure the trying experience she had in trying to diagnose the disease.
The 12-year-old Napanee native has taken it upon herself to organize the Greater Napanee Chiari Walk on Aug. 20, which will depart from Conservation Park at 11 a.m.
Money raised through pledges, online and silent auctions will be donated to the Canadian Chiari Foundation, which is dedicated to raising awareness and fighting the disease.
“Chiari is a rare condition that me and my mom have,” said Punchard. “Your lower brainstem, the cerebellum, is herniated out through the bottom of your skull and it causes pressure on your spinal column.”
If left untreated, the condition can cause paralysis. Everyday ailments include headaches, restless legs, indigestion, heartburn and sleep apnea.
An estimated one in 1,000 Canadians suffer from the disease and many endure a similar story to Punchard when seeking a diagnosis. She suffered from debilitating headaches and would often have to come home early from school. Unsure what the problem was, doctors diagnosed strep throat, mono, appendicitis and even hematoma, but still the symptoms persisted.
It wasn’t until her mom Tanya, who has background as a gymnastics coach, suggested her daughter go for an MRI. After her daughter’s successful diagnosis that she too was tested for it and found the answer as to why she too had had similar ailments when she was in her teens.
“We spotted it out of coincidence, but she had classic symptoms of (chiari) that nobody had diagnosed yet,” said her mom. “If it wasn’t for the pushing we’d still be sitting wondering what’s going on. I wouldn’t be diagnosed yet either. I’ve had symptoms since I was about 17.”
Both mom and daughter have undergone decompression surgeries to help treat the condition. While helpful, they will never fully eradicate the symptoms. Sierra will continue to have checkups with surgeons throughout her childhood as her bones continue to grow.
In the meantime, she’s taken the proactive step of organizing the Aug. 20 fundraiser to help spread the word and encourage others not to give up when searching for an answer to their symptoms. It took over 10 doctors to find her underlying disease, some of which had even suggested she begin seeking psychiatrists to explore the idea as to whether or not the pain was all in her mind.
“We’ve now got her G.I. specialist saying when she had her check up that next time he has a case of acute abdominal pain, maybe he’ll send for an MRI,” said Tanya. “It’s got some doctors now thinking outside the box.”
She says local businesses have been extremely supportive of her daughter’s walk with several donating auction items. Her daughter has also gathered over $800 worth of pledges for her walk, well on her way to her new goal of $1,000, shattering her original goal of $100. Registration for the Aug. 20 walk will take place at 10 a.m. in Conservation Park with the walk getting underway at 11 .m. The route will follow the Napanee River trail to Springside Park, where participants will turn around and head back towards Conservation Park. Walkers will have the option of doing the course once or twice.
For more information on the walk and auction items, visit the Greater Napanee Chiari Walk on Facebook.