Last night when I was thinking about all the people who have gotten us to where we are today with regards to our diagnosis, I wanted to make sure that I thank them as well.
The Harkins’ are one of those families. Kirsten is the Executive Director of the Canadian MPS Society. Her husband is Todd and her 3 kids are Jansen, Jonas, and Nicklas (he has MPS I). They were the first family we met who had gone through a diagnosis of MPS. I called her days after we began testing Trey for MPS, and 2 days later she was over at our house with information, pamphlets and support. When ERT became a possibility, she walked us through the steps of getting it for Trey in Canada, and when it became approved by the FDA, she made phone calls making sure that people knew we wanted this for Trey now. When we began to find out about CBT’s, she sent out emails to doctors and international MPS Societies asking them about their experiences with them. And not only that, their family has become friends of ours. They do an awesome fundraiser called the MPS Cup, www.mpscup.ca.
I’ve also got to mention Dr. Stockler. She is the best doctor we could imagine. She is the doctor who diagnosed Trey. You may have read in “Trey’s story” about how difficult learning about Trey having MPS was for us. Some doctors asked us “Has Trey always looked like this?” Others treated us like we were awful parents for not knowing that Trey had MPS. “Isn’t it obvious?” And still others told us that he is severe and will die by the time he’s 10, like it was something completely insignificant: “Your son is going to die before his teens…are you thirsty? Would yo like something to drink?” Not Dr. Stockler. She had tact and compassion and understanding. She made it easier on us. She has also done an incredible amount for our family and Trey. I won’t mention it all because there is too much to thank her for, but especially with regards to getting Trey ERT and making this CBT a possibility, she has worked so hard for us- how many doctors email their patients on weekends and their time off? Not many in my experience. She has been amazing. So far, these have been families and people we have met through MPS.
I cannot say thank you without mentioning Tovah, Quincy, and Asher Paglaro. Tovah is the mama who set this entire site up for us. Right after I sent out an email asking our friends and family for help with fundraising, raising awareness, or getting a website set up, she emailed me back offering to help with it all. She has spent countless hours learning about websites and in the new year she is also going to spearhead a new fundraiser for us. All of this while being a mama of a little one and working full time.
And I save my family for last. I cannot thank them enough. Ever since we received our diagnosis, our family has rallied together and given us amazing support. Each day we have at least one family member over helping out, sometimes as many as four (especially recently while getting ready for this trip). Whether it’s playing with the kids while I have a phone meeting/interview, babysitting while I take a nap, or learning about various aspects and policies of government health, Canadian law, pharmaceutical companies, or other MPS related activism, they have been here for us. I am sane today because of them. I love you!! We have many other friends who have kept us going and given us support through this time as well, and we want to say thanks. Just coming over, playing, hanging out, and eating with us has normalized us through this time, and all of your emails keep us going. Knowing that we have all your support truly makes it easier. Thanks for being there for us. The past few monthes have been a huge learning experience for us in all aspects of life and we are so grateful for your friendship. Lots of love, Deb, Ry, Trey, and Avery