April 2, 2010 mcfadyena

Join us at "Tacos for Trey" on May 8!!

On Saturday, May 8, 2010, we are hosting our third “Tacos for Trey” fundraiser and we are hoping you can make it!
On Valentines Day in 2006, just before his second birthday, our son Trey began diagnosis for Hunter Syndrome (also known as MPS II), a rare and degenerative disease that can significantly decrease quality of life and life span. In February 2007, just before his third birthday, Trey began Enzyme Replacement Therapy (ERT) for Hunter Syndrome at BC Children’s Hospital, the first child in Canada to begin this lifesaving treatment. Although wonderful and exciting, ERT is not a cure.
Once we adjusted to the diagnosis, we committed ourselves to raising awareness and funds for MPS II research. This is why we hold “Tacos for Trey.” We have created an MPS II Research Fund within the Canadian MPS Society, a registered charity in Canada, and plan on fundraising until we find a cure for this awful disease. As this is a rare disease, the government does not fund any research to find a cure.
Here are the details of the event:
“Tacos for Trey”, A family friendly Mexican Fiesta
Date: Saturday, May 8, 2010 from 3:00-6:00pm
Location: Lynn Valley Elementary School, North Vancouver
Since its creation in 2007, the MPS II Fund and “Tacos for Trey” has raised over $115,000 and has given away $114,000 to research. We are really excited about the research we have funded and are hopeful for Trey’s future. He continues to grow tall and develop well. Trey’s joints are within normal range, and since beginning treatment, have maintained range. His features have softened and to most people, he looks like every other kid around him. And at the age of 6, when we were told to expect a very different outcome, Trey is doing wonderfully and we feel great.
However, Trey is not like every other kid around him. Every year we go for tests to cardiology, opthalmology, orthopedics, ENT and more. Trey’s hearing and heart valve problems have progressed since he began treatment. ERT is a lifesaving treatment, but awesome as it is, and grateful as we are that he has it, ERT is not a cure. And we need a cure. We want to see Trey grow up with his siblings. We want the opportunity to see the path Trey chooses as an adult. We want to die before he does.
So, please join us at “Tacos for Trey”, where we will eat, drink, play, bid on auction items, and enjoy good company, and where you can know that after you leave, you money will be granted to a brilliant researcher who will lead us closer to finding a cure for Hunter Syndrome. If you cannot attend the event but would like to donate to research for a cure, you can donate online at: www.treypurcell.com. We look forward to seeing you there!
Deb and Ryan Purcell
If you cannot make the event, but would like to donate, you can do so on the home page of this website.

Additionally, if your company would like to sponsor “Tacos for Trey” and be recognized at the event, please contact Deb at: dcehak@telus.net.


We want to hear from you! Send us your story so we can share it with the world. Every person and family battling Hunter Syndrome has a unique story to tell - one of bravery, resilience, and perseverance. We'll share all stories online here and on our social media feeds!