Andrew McFadyen of the Isaac Foundation (www.theisaacfoundation.com) stayed with us last night while he was in town taking part in the Liberal Convention. He’s running for government. What an awesome MP he’d be. He’s passionate and has a huge, huge heart. Who’s Andy? I’ve written about him in my blog and news before, but for those who don’t know, he’s dad to Isaac. Isaac is a little guy, only 6 weeks younger than Trey, from Ontario who has MPS VI. We first met Andy, his wife, Ellen, and their kids Gabriel and Isaac, two monthes after Trey’s official MPS II diagnosis, at a Canadian MPS Society conference. Earlier that week we had just seen their family on the cover of the Globe & Mail, fighting to receive funding for ERT for Isaac.
Meeting them was like coming home. I’ve only hung out with Andy three times now: at the MPS conference, at their home in Campbellford (a quick side trip during one of our trips to UNC), and this morning, but he feels like family. It’s amazing. Everything he says feels good and I am immediately comfortable around him. Ellen is the same. She stayed with us last year during the MPS Symposium. Our families have similar values and priorities which makes us even closer, but the diagnosis has made us family. Minus Sadie, our kids are the same ages and were diagnosed around the same time. There is a connection that I have with their family that is indescribable.
I told Andy about the blog I posted yesterday and he gave me a different perspective. Before ERT, we knew the paths our kids would take. With many diagnoses, we are given an end point. This is where the story ends. Not knowing… that is good. Most of us don’t know how long we will live or what our futures will hold. We don’t have a known end point. This is hopeful. Now that they have ERT, hope is back and Trey and Isaac are like Gabriel, Avery and Sadie. There is hope and we can actually visualize them getting married or having kids or whatever.
Hanging out with people who really understand this diagnosis is so so so good for me. It’s hard to describe, but it’s like I can finally, actually relax. Living with MPS is like living a life (at least a huge part of your life) that no one around you understands, and then once every few years you get to spend time with someone who actually gets it. Completely. I don’t have to describe what I’m feeling or hide what I’m feeling or explain myself. The things Andy said while he was here…. it’s like he can read my mind. He just knows exactly what it is I think and feel without me having to say a thing. When no one else around me besides Ry has a clue (although extremely well intentioned our family and friends are, and understandably clueless), there is something so familiar and comfortable and wonderful in being understood. No words necessary.
Thanks, Andy, for the visit. And thank you for you and your family. We love you!!
PS. Happy ‘Time for a Cure’ Day!!!!!!!!!!!!! I hope you all have a wonderful day. We’ll be posting something up to the ‘Cure’ website tonight or tomorrow.
