19 October, 2013 mcfadyena


ea04e4d838d111e38a6422000a1f971a_8Hi Everyone,

Ever wonder what HOPE looks like?  We saw it first hand today.  It looks like hundreds of people in a small community gathered to support a little boy who suffers from MPS II.  It looks like bouncy castles, sugar shacks, candy mountains, dunk tanks, fire trucks, police cars, games rooms, and magicians!  It looks like strangers donating money that some can’t spare to help us find a cure for MPS.  And while HOPE can take on many forms, I was so proud of the form it took today.

photo 1-4We spent the morning and afternoon at Jack’s Family Fun Fair, an event organized by the family of Jack Higginson, the little boy who was diagnosed with MPS II this summer who we’ve had the fortune of getting to know.  Jack’s aunts, Courtney, Sarah, Lee, and Emily, as well as many other family members, worked tirelessly over the past few months to pull this together.  Money raised is going to support Jack’s family as they deal with the high cost of treating this disease, and they will be making a donation to The Isaac Foundation’s MPS II Fund, which is co-ordinated and created by the equally amazing Deb and Ryan Purcell.

We had a fantastic time.  The boys took in all of the activities, dunked Jack’s dad in the Dunk Tank (twice!), and really enjoyed their time with Jack.  The Higginson family all did interviews for local television and did a fantastic job of spreading awareness of this disease and educating the public about how incredibly special our children are.  Everyone who attended seemed to really enjoy themselves.  The Higginson’s should be proud.  They’ve brought us one small step closer to a cure, and I’m so happy we got to be there to see the wonderful work they did.

photo 2-3We’re looking forward to spending more time with Jack, Ben, Kristin and their entire extended family.  We’ve always vowed to find a cure for this terrible disease.  It’s nice to find more partners in our quest along the way; partners who, like us, will never give up the fight for our kids!

Drop over to www.jacksjourney.ca to read about Jack and to follow his fight.

With Love,