CAMPBELLFORD – Students at Kent Public School energetically poured into the play yard recently for a Jump-A-Thon fundraiser in Support of the Isaac Foundation.
The event which included hula hoop contests, ball hockey and music, was just one of many fundraising initiatives that have been held for Kent’s own Grade 2 student Isaac McFayden. While energetic and full of life, Isaac lives with MPS VI, a disease so rare it affects only five children throughout Canada.
MPS VI is a progressive disease that’s caused by an enzyme deficiency. It creates a variety of symptoms that can affect every aspect of the body from growth and internal organs, to muscles and joints. There are various degrees and types of MPS, such as the MPS VI that afflicts young Isaac.
“Our world was definitely changed forever in 2005 when at 18 months Isaac was diagnosed with this devastating disease. It was very hard on both me and Lisa, who at the time was pregnant with Gabriel, our second child,” said Andrew McFayden, director of the foundation and Isaac’s dad.
Although Isaac’s brother Gabriel was not born with MPS, at the time the McFaydens were faced with a very real one-in-four chance that their new baby would also be born with the genetic disease.
“It was a hard time and we both took time off work but we spent some time feeling sorry for ourselves and for Isaac, we realized he wasn’t going to get better with us sitting around watching him deteriorate, which is what began the Isaac Foundation.”
The McFaydens have been working tirelessly ever since to help their son and others afflicted with this rare condition. Andrew McFayden said that, luckily for Isaac’s sake, the foundation was able to achieve a lot in a small amount of time. In 2005 when this began, the lifesaving treatment available to slow the progression of MPS was only available in the US and was far too expensive to afford, costing millions of dollars a year to administer.
“Our first goal was to get the treatment brought to Canada and then to have the province fund it fully,” McFayden said. “It was a long and hard fight but we were successful and it has made all the difference in all our lives and continues to help maximize Isaac’s quality of life.”
Since the Isaac Foundation’s inception in 2006, it has donated more than $300,000 to research and is close to committing another $60,000 towards finding a cure for Isaac and others who are suffering from this rare condition. McFayden said it’s thanks to continual support, like that at Kent Public School, that they are able to continue achieving their goals at the foundation.
Kent Public School’s May 17 Jump-A-Thon raised more than $1,000 for the foundation, which is a nice addition the $12,000 the school has already raised over the last three years through other endeavours such as this.
“Although Isaac’s illness causes him to face certain challenges, he never comes across or presents himself as if he has any challenges,” said Ms. Lisa. “He’s just so personable and smart, and has such a great attitude and joy for life that it’s really inspirational to watch.”
She said as a school, Kent is often asked to support a number of charities all very worthy of support, but it’s particularly great when they get an opportunity to help out with something so close to home.
“Isaac and our fundraisers have brought us so much closer as a school and have fostered such a sense of community among the students and staff,” said Ms. Lisa. “All you have to do is look out in the yard and see them interacting with Isaac, watch the participation, excitement and acceptance and it’s like that every time we hold an event for the Isaac Foundation.”
McFayden said the Isaac Foundation has a few of their bigger fundraisers coming up over the next few months including their main Gala for the Cure on Oct. 13, 2012 and their charity golf tournament on June 23.
He added this coming May 26 and 27 the Isaac Foundation will be participating in Ottawa’s annual race weekend in an effort to raise funds for the foundation. A local running team of more than 35 individuals have been fundraising and collecting sponsors leading up to the event, and McFayden said it will be interesting to see how much money the foundation can raise.
“The research we help fund is beyond important and looks very exciting. Some of it quite promising for Isaac and others in the shorter term so we’re in this to really do everything we can to continue funding the MPS research taking place across the globe,” he said.