Dear MPS II Fund supporters,
It has been 6-months since I posted an update on Trey’s website and longer since I sent out an email. I apologize for my silence. So much has happened in the last year. Our family spent a year in Los Angeles so I could pursue my dream of training as a Narrative Therapist. We are back in Vancouver now, but while away, MPS II was present. The intrathecal trial Trey has been in since 2011 came to an end. Trey is still receiving drug, but this news… well, I cannot even find words right now, but I did write a blog post about it, that you can read here: https://mpsii.theisaacfoundation.com/2022/06/05/intrathecal-trial-tak-609-update/
Also while in LA, our dear and beautiful friend, Jack Fowler, passed away. I still struggle to find words about Jack’s passing, but I wrote a blog about Jack here: https://mpsii.theisaacfoundation.com/2022/06/10/jack-teagan-fowler/
In the direction of hope, we funded a $65,000 research grant to Dr. Laura Rigon entitled “A drug screening to find new therapies for MPS II.” If you would like more information, you can read my blog here: https://mpsii.theisaacfoundation.com/2022/06/15/mps-ii-research-grant-provided-to-dr-laura-rigon/
With so much reading in the above blog posts, I will not add too much more here, but I will give an update on Trey. Trey is in his final year at West Vancouver Secondary School. His school is magic. His head teacher, Heidi, texts me on weekends with new toothbrush options or if she can buy cookie moulds in the shape of dog biscuits to make cookies for Trey’s service dog, Griffin. She organized a party, that even the principal came to, on Griffin’s 12th birthday because Trey loves Griffin so much. She also calls me to get updates on his transition to adulthood and is constantly brainstorming with me to think about things Trey would love to do and how we can make his life better.
Regarding Trey’s health, he is doing well. There was some concern that Trey may need surgery on his spine, but after multiple referrals and opinions, it appears Trey will not need surgery at this point. Trey also saw cardiology and his heart is doing well. Respirology and ophthalmology are upcoming in the new year.
In very sad news, Trey’s ENT, Dr. Paul Moxham, who we have known since Trey was one-year old, has a brain tumor. I do not want to share too much at this point as I do not feel ready to share and I do not know how much his family wants shared, but I have been to visit him a number of times and it has been wonderful to get to know him and his family in deeper ways. Paul is one of the most incredible human beings I have met. He has donated to this fund, ran the 5K at our charitable runs, and spoken at our gala. I love him and his family dearly and am reminded, like with MPS, to find the beauty in life, as we never know how much time we have.
With that said, holidays can be brutal and beautiful. Wherever you sit on that spectrum in general or at this moment, please know you are not alone. Reach out if you need love and support. I am always here.
And lastly, due to my silence, I have received messages asking if we are still fundraising, and the answer is yes! Until all of our boys and men have treatment, we fundraise. We know every donation could be put elsewhere and we take all donations seriously. If you would like to donate, you can do so here: https://mpsii.theisaacfoundation.com/#section-donate-now
With all my love,
Deb, Trey and our whole family