Parents Andrew and Ellen McFadyen are stubborn — they’ll do anything to find a cure for their son Isaac’s disease, including raising $1 million for research.
Isaac, a well-mannered, handsome little man, has no shortage of boyish energy in him, but his MPS VI diagnosis does stick him with a shortage of time.
At age eight, Isaac heads to Toronto’s SickKids hospital once a week to receive treatment for an enzyme deficiency. The therapy he began five years ago has slowed down the progress of the disease, which stunts growth, stiffens joints, affects the heart and airways, and shortens lifespan.
Finding a cure for the extremely rare disease is something his Trent Hill’s parents have been working on for years now, having established a foundation in 2005 to raise money for research. While there’s no cure yet, the couple believes one is close at hand based on ground-breaking research done in the U.S. which was funded by The Isaac Foundation, and that this last $1 million should get them there.
And now, the McFadyens have extra reason to be optimistic. One of the projects the Isaac Foundation has been funding for the last three years out of New York City is reversing symptoms caused by the disease; their next step is to get it into human clinical trial and ensure it’s safe for kids, and they’re confident it will be successful. The drug being studied is an oral anti-inflammatory already used to treat bladder inflammation and has been approved by Health Canada and the Food and Drug Administration in the U.S. According to Mr. McFadyen, the human trial probably needs less than a year to provide useful data.
If successful and a cure is found, not only will it save Isaac’s life, but the lives of many others as well.
To help them come up with the $1 million they believe will seal the deal in the research and to further increase awareness, the McFadyens are holding Project One Million.
Those wanting to help can attend the third annual Gala for a Cure, featuring dinner, wine tasting, a silent auction, Juno Award-winning musician Ron Sexsmith, and a piano number by Isaac himself. The event takes place Oct. 13 at the Best Western Convention Centre in Cobourg.
What caring parents wouldn’t do whatever they could to save and prolong the life of their child? Those fortunate enough to not have to face the same situation as the McFadyens can help them in the battle to beat the clock either by attending the event or by supporting the cause with a donation. More information and tickets can be found at www.theisaacfoundation.com.
–Northumberland News/The Independent