February 6, 2017 mcfadyena

West Van High!!

Trey & Avery- Aug 2016In the past few months I’ve started a number of blogs that got interrupted by life, so I’ll give you a shortened version here, followed by information about our yearly Vancouver Scotiabank 5K & ½ Marathon fundraiser! Here goes:
One of Trey’s biggest changes in the past year is starting school- high school no less (Trey turns 13 on March 1, which is INCREDIBLE). Trey homeschooled until now. The elementary public school system in BC is just not set up for a kid like Trey. Trey wants to be included, but can’t do anything at grade level, so he would have been pulled out of class for almost everything, which would have been sad and hard. I found a high school program though, that is basically a mini Special Ed school within a larger public school. Kids in the Special Ed program can be integrated into things that they can participate in meaningfully, and stay in the Special Ed classrooms for things they can’t. The neat thing is, because the program is so big, even when Trey isn’t integrated, there’s a bunch of other kids around, so he’s not alone or isolated.
Trey & Avery- Aug 2016I am IN LOVE with the program. The highlight of the program is that the woman in charge of Trey’s program SEES Trey. She sees the well-intentioned, good-hearted, kind, friendly, generous and beautiful kid that is my son. She doesn’t see only the kid who tells adults “you have to go” when he wants understandable control and independence over his life or a kid who most of the world sees as disabled. Another aspect of the program that I am so grateful for is that they REALLY understand teens with intellectual disabilities. I didn’t realize until Trey joined this program, how lost I felt and how much there is to learn for a mom of a teen with special needs. I was clueless. Imagine transportation, friendship, going on outings and joining programs without an adult who knows Trey well, using a public restroom, and puberty (to name a few) for someone who is intellectually a young child and doesn’t understand all the social intricacies of our culture. It’s complex, sometimes scary and wonderfully heart-warming. I am on board with this journey. I LOVE the families we have met. They get me, they get us. I’ve always had my MPS II dragon moms (and a few dads too) to talk to and support me, but they are far away and can’t get together very often for playdates. We’re finding community here. For his 13th birthday party, for the first time ever, we are inviting Trey’s FRIENDS to his party. HIS friends.
For medical updates, Trey continues to receive weekly IV Enzyme Replacement Therapy (ERT) and monthly IT ERT which is still in clinical trial- no major updates there.  We also still have our every 6-12 month doctors appointments, which goes hand in hand with anticipation and trepidation. The spinal cord in Trey’s neck is compressed enough from build-up that he can no longer ski, toboggan, skate, do gymnastics or anything else with a risk of falling. Falling risks paralysis. This is obviously hard news to bear, but in the scheme of MPS, it is literally not the end of the world like MPS can be (AND it doesn’t require surgery at this point), so we are grateful and find joy in other activities. Trey also received a new port last July for his IV infusions; his previous port lasted something like 8-years, so it did him well.
And last but not least in the updates of our family, another discovery for me: raising siblings to a child with a rare and progressive disease. Avery is currently participating in a sibling support group for kids with special needs, which is a big deal. Our family is so used to our family that sometimes we forget just how different our family is from most. We can’t play family board games or do family puzzles or go on family bike rides or go on family vacations with any kind of ease or relaxation. We can’t leave anything lying around the house without it getting broken. Avery and Sadie get frustrated often- it SUCKS when you forget and leave something out only to discover it ruined- which needs validation and leads to conversations about compassion, empathy, and all of our differences and strengths and weaknesses. On the flipside, they patiently help with shower routines, shoe tying, reading, buttering toast, and are scared of what might happen to Trey and worry about how they will support him once Ryan and I can no longer do so. There are a lot of things coming up for Avery and Sadie having a sibling with MPS, but I am learning and we are talking. They are (Raleigh too- she gets a LOT of love from Trey ;-)) are incredible siblings. Scotiabank 2016
I’ll wrap this up and get to the Scotiabank Run. On Sunday, June 25, we’re running in the Vancouver Scotiabank 5K & ½ Marathon to raise funds for MPS II Research. If you’d like to join us and run in the 5K or ½ Marathon, shoot me an message. If you’d like to donate, there’s a donate button on the right hand side of every page. 99% of donations go to research. Not all charities can say this!
Scotiabank Run 2015Since 2007 when our family began the MPS II Research Fund, our fund has grown. A number of Canadian MPS II families have joined our fund and The Isaac Foundation, and are organizing their own fundraisers. Jack Higginson lives with MPS II and his family is organizing a gala on April 29 in Peterborough, Ontario. If you’re in the area, their huge extended family is one to meet (they’re funny and loving and passionate and real), and all proceeds go to MPS II! See their website for more details: http://www.jacksjourney.ca/ MPS-II Gala 2017
With love and endless gratitude for your support,
Deb, Ryan, Trey, Avery, Sadie and Raleigh


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!