Andrew and Ellen McFadyen created The Isaac Foundation in 2006 after their first-born son Isaac, now six years old, was diagnosed with the ultra-rare disease, caused by enzyme deficiency, the previous year.
Only four children in Canada are currently known to have MPS VI while others around the world live with it as well.
Symptoms include stiffening joints, stunted growth, heart and airway disease, spinal cord compression, and a shortened life span.
“When Isaac was first diagnosed, my wife Ellen and I were struggling to come to grips with our new reality. Initially, we thought that the hopes and dreams that we had for our son were automatically taken away,” Andrew McFadyen told the crowd attending the foundation’s first Gala For A Cure on Friday night at the Best Western Inn and Convention Centre in Cobourg. “Obviously, we were worried about his quality of life, his life span and how we were going to cope with giving him the support he would need as his disease progressed.”
They wanted to do everything possible to help their son, but they knew they couldn’t do it alone.
Although is no cure for MPS VI, a type of Enzyme Replacement Therapy (ERT) called Naglazyme was approved in the United States in June 2005. However, the cost for treatment, depending on body weight, runs between $300,000 to $1,000,000 per year.
Andrew McFadyen recounted seeking the help of Conservative MPP Elizabeth Witmer, who was the opposition’s health critic at the time. He called her “in a panic one evening, desperate for someone to help us advocate and solicit the government to fund the treatment that Isaac needed in order to slow the progression of his disease.”
Witmer scheduled a meeting with McFadyen the following day at her office at the Ontario Legislature. He arrived with his literature and brochures as well as a copy of an Isaac Foundation DVD.
The meeting turned out to be a conversation about their families.
“After a few hours, Elizabeth told me that she was going to help me and not, as she said, because she was a politician, but because she was a mother,” McFadyen said. “From that day forward, she worked tirelessly for our son and, I argue, he is here today because of her steadfast efforts.”
Witmer successfully helped the McFadyens lobby the provincial government to fund the ERT treatment’s for Isaac.
McFadyen introduced Witmer as having “an illustrious 20-year career as an MPP,” including a stint as the Deputy Premier of Ontario. She has also served in numerous cabinet positions, including being the Minister of Labour, Minister of Health, Minister of Education and Minister of the Environment.
“But to us, more importantly, Elizabeth is the person who championed our cause in the Ontario Legislature and led the fight to save our son from the ravages of his disease,” McFadyen said.
McFadyen pointed out that it was evident to most in the room that he is a Liberal. He even ran to be the local federal candidate in 2009. He said the question he was asked the most during his campaign was about the involvement of a Conservative MPP and why he would seem support from a sitting member of another party.
“My answer then and my answer today is plain and simple — I wanted to save the life of my son,” McFadyen said. “As I look out at him now and I admire his incredible smile, and his amazing zest for life, I’m not sorry whatsoever that I sought the support outside my party lines. Advocacy for the life of a child should never be constrained to boundaries of any one party, and I feel sorry for those that feel it should.
“Elizabeth Witmer was there for us when no one else was and our son is here today because of her tenacious work, her kind and caring nature, and her steadfast refusal to accept no for an answer from our government.”
McFadyen noted that Witmer visited Isaac at the The Hospital for Sick Children about a month after his treatments began.
On Friday, The Isaac Foundation presented Witmer with its first recognition award, which will be presented annually to a different recipient on behalf of the foundation. The plaque reads, ‘Lifetime Impact Award – Presented to Elizabeth Witmer For Creating Positive Change in the Life of Isaac and Advocating for Those Affected By Rare Diseases.’
Following the presentation, Witmer said the award was “heartwarming.”
“It just makes you so happy that you could be a small part in giving him the quality of life he enjoys today,” Witmer told Northumberland Today. “I think Isaac is so fortunate to have parents like Andrew and Ellen that have advocated so much on his behalf. And he’s such an engaging little boy.”
Witmer recalled that when she first approached the government, “we weren’t given any reason for hope or optimism at that time.”
She invited the McFadyens to Queen’s Park and introduced them to other ministers.
She couldn’t have been happier when then-health minister George Smitherman announced the treatments would be funded.
“This was a child who needed help,” Witmer said. “This was something we should and needed to do.”
Of being a politician, “you can make a difference,” she said.
“We’re human beings like everyone else. I’m a mother,” added Witmer, who attended the event with her daughter Sarah. “I’m hoping we will find a cure. I’m confident we will.”
Witmer said of all the awards she has won, the award from The Isaac Foundation will hold special meaning to her.
“There’s nothing better than this,” she said.
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Also on Friday night, The Isaac Foundation debuted its updated DVD, recorded and edited by Andrew McFadyen’s brother Cameron at Whistlestop Productions and their friend Jared Coleman from Shoreline Productions.
Wine tasting was provided by Black Prince Winery.
Canadian singer/songwriter Ron Sexsmith performed an intimate acoustic set for the crowd and a silent auction, including an autographed guitar from international music sensation John Mayer, was held. The auction was also well supported by numerous businesses throughout Northumberland County.
Funds raised by The Isaac Foundation are directed to support and fund innovative research projects that aim to find a cure for MPS VI.
Costs amount to about $100,000 each year to run one project with one full-time researcher, McFadyen has stated.
McFadyen was ecstatic to announce earlier this week that the gala — a new fundraiser for the Foundation — had raised $20,000.
“Raising $20,000 at the gala is wonderful because it gives us enough to top off the research grant that we were waiting to hand out. With these funds, we can now go ahead and send a cheque out the door, ensuring continuous funding for a project that we believe in very much,” McFadyen said. “And it’s nice to be able to inform our donors, and the guests at the gala, that their money is making a difference and that it will go a long way to providing a better quality of life by allowing these research projects to continue.”