While we were at Disney World on Trey’s Make-a-Wish trip, we missed The Isaac Foundation Gala on November 15. It is a really important event for us and we were sad to miss it. Andy and Ellen McFadyen are family, they’ve been with us on this MPS journey since we began, and going to their gala is like going home to say hello. The Higginson/Redmond’s joined our MPS II Fund and Isaac Foundation family last year and their family has become near and dear to my heart. Courtney Redmond, sister to Kristin Higginson and aunt to Jack Higginson who lives with MPS II, spoke at the gala. She emailed me her speech and I wanted to share it with you. Courtney, thank you for EVERYTHING that you do for our fund, for your sister, for your nephew. You are amazing and beautiful in so so many ways and I am fortunate to know you. Here it is.
The Isaac Foundation – 5th Annual Gala for a Cure
I am so honoured to be able to speak tonight on behalf of my nephew Jack and the MPS II Research Fund.
I guess in life we are constantly challenged. We face adversity that will make us, or break us. In July of 2013, our family faced our biggest challenge yet. Jack was diagnosed with MPS II, Hunter Syndrome.
That day, I sat in a small meeting room at Sick Kids Hospital with my sister Kristin, her husband Ben, my mom and Ben’s mom. I wish I could say it was all a blur, but it wasn’t. I remember how Dr. Raiman’s 3 small words changed our lives forever. “I’m so sorry”.
In the moments that followed Jack’s diagnosis, our human instincts kicked in and we were faced with one of those make or break type moments. Well, we chose to fight. We chose hope. We chose Jack.
I spent countless hours online researching MPS II treatments, other MPS II families and even dietary considerations. By now I’m pretty sure that I have earned my honorary Google PHD! When researching, I quickly came across a little boy by the name of Trey Purcell. Trey has MPS II and is cognitively affected by the disease. I remember reading a blog his mom Deb had started. Our family immediately connected with this information – not just the medical, but the emotional part. We reached out to Deb and her husband Ryan. Deb understood what we were going through and offered her support to us around the clock. She is now one of our biggest supporters and we are hers.
Deb and Ryan Purcell founded the MPS II Research Fund following the diagnosis of their son Trey. With a severe lack of MPS II research fundraising in Canada, Deb and Ryan knew they had to take matters into their own hands. And that’s exactly what they did. Deb told me just the other day, that because this is so incredibly personal, Ryan and I put our heart and soul into our projects to raise as much money as we can. The more we raise, the sooner our boys will have a cure. Every donation, every dollar matters.
One day when Deb and I were chatting, she asked me if the town of Campbellford was by any chance close to Peterborough. Because if so, there was someone we absolutely had to meet. His name is Andy and he will help Jack.
I immediately Googled: “Andrew McFadyen”, yet another time where my Google PHD has come in handy… I think that when we finally met, Andy was somewhat weary by my knowledge of him, but nonetheless, he embraced our family and embraced our family and has literally never stopped doing everything he can to help Jack.
Over the past 7 years the MPS II Research Fund has funded research studies totaling almost $400,000. In 2013the MPS II Research Fund joined forces with The Isaac Foundation making for a partnership that is simply unstoppable and in 2014 alone, the MPS II Research Fund, under the helm of the Isaac Foundation awarded 2 grants totaling $100,000 with a focus on gene therapy and vector transportation. With every research grant awarded, our MPS community moves closer to a cure.
Our family’s decision to follow in the fundraising footsteps of the Purcell’s and the McFadyen’s really wasn’t a decision at all, but an instinctive and necessary step towards finding a cure for MPS. Our family has held several fundraising events over the past year benefitting The Isaac Foundation’s MPS II Fund. We recently held the second annual “Jack’s Family Fun Fair”, which had everything that Jack loves, including bouncy castles, face painting, petting zoo’s, fire trucks, a dunk tank, sweet treats and the list goes on.
A dedicated group of Jack’s friends and family also joined The Isaac Foundation’s “Race for a Cure”. With most team members only ever having run when being chased or having to wrangle a small and unruly toddler, the $10,000 we raised seemed well worth all 21 km’s! Even with a team member forgetting her shoes, that’s right, her shoe’s for the race, another running despite injuries and myself, who was 5 months post partum running with what I now painfully know were running shoes that were a full size too small, we all crossed that finish line.
I would be absolutely remiss if I didn’t take this opportunity to thank The Isaac Foundation. Andy and Ellen; I wish everyday that we were brought together under different circumstances. Our family is so thankful for your support, for your love of Jack and for your endless crusade to find a cure for our boys. In a prior life, I spent years with the military and I took away some of life’s most valuable lessons: 1. Always, always lead by example. 2. Keep your battle buddy close and 3. Hold the line. At all costs. We would gladly follow you to the end of the earth and back to find a cure – you are true leaders. We will forever keep you close to our hearts and we will hold the line.
Thank you.
