August 24, 2020 mcfadyena

An Overdue Update

Hello MPS II Fund and Trey supporters,

This update is long overdue and for that, I apologize. I have been thinking about posting an update for a while and have been in talks with folks about fundraisers and events, but this pandemic has made updates tricky as I either haven’t had enough information to share or the information I have had to share was subject to so much change, I didn’t know when and what I could share that was reliable! At first, I was planning to update you about this year’s Construction Cares event which was scheduled for June 2020, but it was cancelled.

I was also planning to tell you about a screening for a documentary our family is in called Boys with Bigger Hearts that was slated to show in Vancouver in May and then June 2020, but it continued to get rescheduled due to COVID-19. We had eventually hoped for a September screening, but it appears that option is off the table now as well. I hope one day to be able to show this documentary to you all because the families in the doc are my family. Simon Ibell and his family became mentors and close friends after Trey’s diagnosis. Joey Howell, the director of the doc, whose cousins live with MPS II and who found me on social media while I was spreading awareness for a gala fundraiser we put on in 2011, has become a very close friend, and Jamie Fowler- Jack Fowler’s mom- is my soul mate. Said simply, this doc is close to my heart and I would love to share it in person, with our community. As soon as we can do that, I will send the word out.

A couple months ago my 95-year old grandma, Omi, who is one of Trey’s biggest supporters, came over for our 7:00pm pots and pans banging in appreciation of our front-line workers, and kindly suggested I wasn’t doing enough for Trey to raise funds this year. She told me a number of her friends had contacted her asking what we are doing for Trey this year and let me know I was missing donations by not doing anything. So here I am. Thank you Omi. JWith Construction Cares and the Boys with Bigger Hearts screening cancelled, and with not being able to do a Scotiabank run either, we won’t be hosting any fundraising events this year. We will, however, accept and put to good use, any donations that you would like to make. To make a donation, please click this link: http://www.theisaacfoundation.com/MPSII/#section-donate-now.

It’s an interesting and exciting time in the research world. There are a wealth of projects and researchers to fund and much of what we have funded is close to human clinical trials. So, I can promise that your donation will be used well and that your funds are saving boys and now, men’s lives- historically, most boys with MPS II didn’t reach adulthood, but thanks to donors like you, kids like Trey are becoming men. If you click the link to the grants we’ve funded, both Doug McCarty and Brian Bigger’s research will be in human trials within the next year: http://www.theisaacfoundation.com/MPSII/mps-ii-grants/.

In news on Trey, he is doing well. At 16-years old!! He loves reading Archie books and graphic novels, he loves playing basketball, tennis, and riding his bike; he loves his family, his friends, school, and his neighbours. After a four-year break from doing infusions myself, due to the risk of bringing front-line workers into our home to do infusions during the pandemic, I opted to go back to doing the home infusions myself. I had originally stopped doing infusions when I became “the person who pokes Trey in the chest” instead of mom to Trey, which was damaging our relationship. Going back to doing infusions myself, I was very mindful of this potential dynamic and things seem to be working out right now. The actual doing of infusions is going well enough for me, and I think Trey’s and my relationship is doing well also. I just have to make sure to give Trey extra hugs and love and positive reinforcement and attention before and after infusions. Who are we kidding: hugs, love, positive reinforcement, and attention helps all the time! 😉

Trey is still receiving intrathecal ERT and there is no news on approval of the drug. Trey is not, however, able to travel to UNC for his every 6-month testing trips due to the pandemic. Fortunately though, Trey can get his doses and necessary tests done at BC Children’s Hospital in Vancouver.

Due to the effects of MPS II on his body, Trey is likely at an increased risk for having a severe form of COVID-19 during this pandemic, so we are needing to be quite cautious in terms of what we do and who we see. And while Ryan hasn’t worked in 5-months, the time spent with our entire family together and its effects, have been immeasurable. I won’t get into too many details, but a lot of repair has been done with this time, and for that, I will be forever grateful.

I am sending love out to you all, in all of your circumstances and situations during this pandemic.

With very much love,

Deb

(These are a few photos of Trey from the past couple months.)

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