© Photo source: Morquio Family Tree Facebook page Melanie Bourdon, 11.
CORNWALL, Ontario – Two brave local children diagnosed withMorquio Syndrome will be putting a face on the rare disease wreaking havoc on their bodies at a fundraising event Sunday to mark MPS Awareness Day.
The local chapter of the Morquio Family Tree, a parent-led support group, is hosting a spaghetti dinner fundraiser on May 18 to raise funds and awarenessfor Morquio Syndrome.
Special guests Aden Racine and Melanie Bourdon are both affected by this condition and live in the United Counties of SDG.
“It is important for people to attend and learn how they can make a difference in the lives of those with severe disabilities,” said Angelle Bourdon, Melanie’s mother and an active member of the Morquio Family Tree.
The spaghetti supper and information session will take place at the Royal Canadian Legion Branch 544 in Lancaster. Doors open at 5:00 p.m. and the cost of admission is $25.
“Empowering these children with the presence of the community strengthens their ability to advocate for themselves,” she said.
The rare disease (part of the MPS umbrella of lysosomal storage disorders) is caused by an enzyme deficiency and it affects major organ systems in the body and causes bone and joint disease, heart and airway disease, and shortened stature.
“It takes a community to raise a child and when a child is born with a severe medical condition that community becomes much larger,” said Bourdon.
For more information on Morquio Syndrome, sponsoring the event or reserving tickets, contact Angelle Bourdon at angelle@morquiofamilytree.com.
By Adam Brazeau
Published on May 14, 2014
SOURCE: http://www.cornwallseawaynews.com/News/2014-05-14/article-3725274/Morquio-Family-Tree-fundraising-for-rare-disease/1