People News

Taking a different path

2.8 from 4 votes
Thursday, May 26, 2011

Learn more about:

Clinical Trials

Jennifer Flinn is running this weekend to raise awareness for a rare disorder affecting her daughter Katie. She tells Chelsey Burnside how it has changed her own life, too

During the 37th week of a healthy pregnancy, Jennifer Flinn heard some of the worst news a mother-to-be can hear: Something was wrong.

While examining a routine ultrasound, Flinn's obstetrician had found three tumours in her daughter Katie's thimble-sized heart. Though the tumours were non-cancerous, Flinn's doctors warned her and her husband that they suspected Katie had tuberous sclerosis complex -a rare genetic disorder that causes nonmalignant growths in most vital organs, and sometimes seizures, developmental delays and other diseases.

"We were pretty devastated," says Flinn, a Barrhaven mother of two. "You realize at that point that the whole life you've planned out is going to take a totally different path than the one you thought."

Four-and-a-half years later, Katie will be walking alongside her dad, Jasson, in this year's Ottawa Race Weekend while Flinn runs the five-kilometre race along the Rideau Canal to raise awareness for tuberous sclerosis complex (TSC). She and her team have raked in about $10,000 in donations -more than tripling their original goal of $3,000 -and Flinn is determined not to let Katie's cause stop there. She has yet to set a new fundraising goal, but with corporate sponsors Giant Tiger, Tartan Homes, Tamarack Homes, Stantec and Novartis on her side, it seems that Flinn has already begun to break the silence that surrounds TSC.

Katie, a lively little girl whose flushed cheeks match her bright pink pyjamas, toddles over to listen as her mom lists the problems that have spawned since her initial TSC diagnosis, all of them requiring constant care from her devoted parents and the specialists who monitor her closely as she grows up. She has developed arrhythmia because of the tumours in her heart, a kidney disease has caused about 40 cysts to sprout on her kidneys and she takes medication to control the seizures she experienced regularly as an infant.

"It's a lot of appointments, a lot of follow-ups and a lot of worry," says Flinn, who sits on the board of directors for Tuberous Sclerosis Canada, a non-profit organization. "It kind of feels like a rollercoaster. You go along and everything will be OK and then there'll be a problem. And then you'll go along again and everything will be OK and then there's another problem. You're always waiting for the next one."

Katie is missing part of a gene that suppresses tumour growth, making it hard for doctors to predict where the condition will strike next. This genetic mutation occurs in about one in 6,000 live births, making TSC just as common as Lou Gehrig's Disease and more so than cystic fibrosis, but it's virtually unheard of. Flinn says she had no idea what TSC was before her daughter became one of the almost one million people diagnosed worldwide.

Flinn and her family have tirelessly combatted the disease, chauffeuring Katie from appointment to appointment to keep it in check. "For her it's just kind of a way of life," says Flinn. "It's sad sometimes to think that you say the word CHEO, and your child knows exactly what that is and where that is. If we're driving and I take a certain route, she'll say 'Oh, we're going to CHEO?' "

It's an erratic waiting game to see where Katie's tumours will form; there are no TSC experts or clinics in Ottawa and no known cure, prompting Flinn to attend conferences, see specialists across Canada and the U.S., and reach out to the two other TSC-afflicted Ottawa families that she knows of.

A Grade 1 teacher, Flinn even wrote her master's thesis on the educational impacts of TSC.

Now that Katie has started kindergarten, Flinn is on the lookout for signs of autism, a disorder that coincides with TSC in about 50 per cent of cases.

"I think the most important thing is to keep the teachers as informed as possible, in order for them to understand what it is that she has, and what some of the potential learning difficulties might be," says Flinn, whose story has made her a local spokeswoman for the disease.

She appeared on the Daytime Ottawa morning show last year to raise awareness.

"We're really lucky with Katie. She does interact really well with her peers, but it's something we monitor very closely."

Flinn, a rookie runner and firsttime participant in Ottawa Race Weekend, hopes to spread the word about TSC through her information booth at the May 28-29 event.

She and a friend are training together, using a website called Couch Potato to 5K, a step-bystep guide for beginners that covers everything from what socks to wear to deodorants that prevent jogging itch.

"We're quite funny together. We meet three times a week, we bring the babies (including Katie's little sister Sydney) in their strollers, and off we go," says Flinn with a laugh.

"But it's been amazing. The Race Weekend's been so successful so far, and I'm very, very pleased with what we've been able to do."


© Copyright (c) The Ottawa Citizen

Author: Chelsey Burnside
Source: Ottawa Citizen
2.8 from 4 votes
Free Newsletter
Related Videos
by Abidemi Uruejoma
by Abidemi Uruejoma