All posts by mcfadyena

11 Oct 2012
Sticky Post By Posted in Media, Newspaper Permalink

Help Isaac Find A Cure At Cobourg Event

Sticky Post By On 11 October, 2012
Oct 11, 2012  |

 Northumberland News

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

05 Oct 2012
Sticky Post By Posted in Blog Postings Permalink

Thankful…

Sticky Post By On 5 October, 2012

Driving the hour and a half to school this morning, I put my iPod on random and just let my music play whatever it wanted.  It was lovely being surprised about what song was coming on next and made for a relaxing trip on a dreary Friday morning in Ontario.  A lot of what came on was upbeat and fun and I enjoyed my journey.  The last song that came on before I arrived in Kingston wasn’t a song at all – it was the sound of my own voice calling out from the speakers and announcing that I had Isaac and Gabriel with me for a bit of fun with the microphone.

My face immediately lit up – I’d forgotten that we used to play around recording ourselves when the boys were little.  Listening to them made my morning – my week, really – and took a bit of the stress I’ve been feeling lately down a few levels.

2012 has been a hard year for us and I feel like we’ve been treading water, just trying to stay above the surface long enough to survive.  Isaac’s health challenges have taken a lot out of us, fighting for Violet was exhausting, and the unknowns that are left with Project One Million is both stressful and Hopeful at the same time.  And just when I’ve been feeling like the tank was running on empty, the voices of my beautiful boys came singing through the speakers in my car.

Our Gala takes place in a week – and our teleconference with Johnson and Johnson takes place 2 days before.  We’ve been struggling to get there – weighed down by everything that’s on our plate.  Incredibly stressful doesn’t begin to describe the process involved with Project One Million – we think about it every moment of every day.  What happens if we don’t succeed?  What happens if we do?  Listening to my boys this morning gave me that moment of clarity I’ve needed going into this final stretch.  This is exactly what Project One Million is all about – giving my son the shot at life he deserves, and giving everyone else suffering from this disease that same chance.

Isaac singing into that microphone this morning showed how innocent, how loving, how truly incredible he really is.  He’s a little boy fighting a battle that we can’t imagine, and we have to help him win it – whatever the cost.

As we head into our Thanksgiving weekend, I’m reminded how truly thankful I am to have Isaac and Gabriel, and my lovely wife Ellen, in my life.  I didn’t really need to hear that recording this morning to remind me, but it was nice to have those voices nudge things back in order for me.  Stress?  We can do this.  Johnson and Johnson next week?  We can make it happen.  And our Gala?  It will be a celebration worth remembering, to be sure!

Project One Million keeps going.  For Isaac.  For Jasper.  For Violet.  For Trey and Case and Justin. For all of those kids out there suffering from this disease – we’re going to fight and win.

Enjoy listening to this gem I found this morning.  I hope it gives you as much pause as it did me, and I hope it gives you a moment to find some perspective in life.  Listen Here! – Gabriel and Isaac – November 19 2007

Happy Thanksgiving.

With Love,

A.