Rare diseases day at the Espanola Recreation Complex

February 25th was a busy day at the oval and the Recreation Complex. Many people showed up to give their support for the Canadian Organization for Rare Diseases (CORD). One of our own little citizens, 15-month-old Iris Mae McKechnie was diagnosed with infantile onset pompe disease and as a result she must have treatments the rest of her life as there is no cure. It is very rare and affects approximately one in 123,000 births. The parents of Iris, Kelsey and Alex McKechnie, were thrilled and overwhelmed with the turnout and donations in support of rare diseases.

Inside the complex there was a raffle and other events. The Lions sold 3,500 raffle tickets. The fun continued outside on the oval as well. The skate-a-thon was a great success with fires, hot beverages, a barbeque and for a special treat, the Paper Kings skated in the afternoon. The day was well set to provide lots of things to do for the children, including hair tinseling and crafts.

The fundraising continued at Boogie Mountain. Lift ticket were sold by donation from 5 to 11:30 p.m. which all went to CORD. As well, there was outside entertainment by the band Seldom Seen, a warming centre and a barbeque.

More than $70,000 was raised for Duke University Clinical and Research Fund for Pompe, with $6,000 raised by the Lions Club raffle for CORD. The McKechnie’s extends their deepest thanks for the public’s donations, Espanola Home Hardware, Espanola Coffee Roasters, the Town of Espanola, Boogie Mountain, The Espanola Volunteer Fire Fighters, the Lions Club, Garnet’s Rental, the Espanola Elks, Papertown Hair, Northern Ford, Seldom Seen, Freshco, Tanners, Giant Tiger, Trailside Sports, Orr Value Mart, Credit Union, Espanola Golf Club, Moga Mania, Skaters Edge, Espanola Beer Store, Blissful Aesthetics, Hopp Fitness, My Place Yoga Studio, Simplicity Natural Foods, Louise Eccleston, Andre Pelletier, Mark Laabs, Carson Nadeau, Richard Duranleau, Mike Belanger, the ladies night out gals, Betsy Gagan and David Gallant. Advertising support was made possible by OJ Graphix, Around & About, Moose FM and the Mid-North Monitor.

Rare Disease Day is a worldwide event recognized annually on Feb. 28. More than 300 million people worldwide have a rare disease and 106 countries participate in the event. People with a rare disease may also experience misdiagnosis and isolation. A disease is designated as rare when less than one in 2000 people are affected. Rare diseases include cystinosis, Turner syndrome and Von Willebrand disease.

Our own little Iris Mae has been a tremendous fighter. She is a hero to her family and friends and is doing quite well. She is walking on her own and making great progress. With all of the support Iris has received, the people of Espanola and area have contributed substantially towards research into rare diseases.