We were overwhelmed today with love and support from so many people congratulating us on Trey’s successful first treatment and the front page article in the Vancouver Sun. Click here to read the article.
We were also on The Beat 94.5 at 7:40am. Click on the play button to listen.
Here are a few of the responses we received. The second email was sent to the Vancouver Sun, the rest were sent to us:
“Deb: Thanks. I’m relieved you liked it. It was actually longer but the editors didn’t have enough space for all the information I had included about MPS and about orphan drug policy. The web version might be different. I’ll get some original photos to you as promised. You can download the electronic version yourself and you can forward it to friends around the country. Keep me posted on future developments. I will forward to you some of the wonderful letters I am receiving from readers who were touched by your experience. We will also be publishing some, I expect, in the letters to the editor in coming days. Your husband described you to me as an inspiration and I certainly could not agree more. Kids have no better advocates than us tenacious type moms!!!!” Pamela
“As a father of a 2 year old, I can only imagine the anguish these parents are going through. We often hear how our tax dollars are wasted (the list seems endless) but it is stories such as this that make every dollar we spend on MSP and taxes worthwhile. Kudos to the parents for fighting for their child and thanks to government for having the compassion and decency to help this family.” Joe
“Hey Deb, thanks for the forward! Turns out I saw it even before you sent it! It certainly caught me off guard seeing my cousin and her family on the front page of the SUN! Congratulations to you, Ryan, Trey, and Avery for achieving everything you have so far, I can’t imagine it being easy.” Cam
“Beautiful article. Really eloquent.” Tovah
“Hey Deb, my mom just emailed me a scanned copy of the Vancouver Sun with your article and apparently Robyn heard you on the radio talking about Trey as well. I think it’s such great news that you’ve received funding and that you’re getting so much exposure. People need to be aware and you’ve done such a great job with your website, the article, fund raising initiatives etc. I honestly think I could see myself crawling into a hole if I had to go through what you’re going through and I just don’t know if I could deal with it all or handle it all anywhere near how you have…by taking action and being so strong. I really think you’re amazing. Take care,” Jen (a friend who currently lives in the Cayman Islands)
“Thanks… heard you on the radio this morning! Great interview! Can’t wait to pick up a paper… CONGRATS!!!” Robyn
“What a lovely picture to see on the front page of the Sun this morning. :)” Amy
“Deb, what a great picture and beautiful article!!! I wish you all the best in treatments. You know I will be praying for him as he goes through each one! Love to you all,” Patty
“Hello Deb & Ryan: Congratulations, what a wonderful thing that’s happened to Trey ,and for that matter, all of you. We are all very excited and I am sure you are too, that Trey gets this one in a lifetime chance for a long and quality life. I know this is still a bit of an experimental trial, but very promising……………… Just awesome. The Best to all of you, from all of us.” Rolf, family and staff
“My mom loves you and we all think you’re an amazing woman Deb. Me and my fam. Wish you guys the best so bad!!!!!! Cute photo too!” Neil
“Deb and Ryan, I just went to Trey’s website and read that Trey had his first ERT infusion this week. I am so happy for you guys and especially happy for Trey that he has begun his treatment. I will be saying lots of prayers for Trey for continued success with his treatment. I wish you and your wonderful family all the best, you are such amazing parents. Every decision you make, every minute you spend trying to figure out what is best for him, every phone call, every email, every tear you cry, every second of every day you spend worrying about his future – it is for Trey and the hopes of giving him the greatest future possible. You are a true example of what love and parenting is about. Every time I visit Trey’s website and read Mama’s Blog, your words always bring tears to my eyes. Not out of sadness but out of the love that you have for Trey, the hope and faith that you have, and all of the wonderful things that are now happening because of your diligence in making sure that Trey gets the best treatments available for him – it is truly inspiring.” Mandy