Updated: Jan 3
Our Annual Family Newsletter of 2022 Events
Happy New Year, everyone!
I just reread our annual family newsletter from last year and I am shocked by how much has happened in a year!
In 2021, our beautiful baby boy Damian went from being perfectly healthy (or so we thought) to being terminally ill with a rapid rare disease called Acid Sphingomyelinase Deficiency. We quickly learned of 3 treatments that could save his life if we acted quickly, with one of the treatments just out of reach unless we raise $3 million to expedite the drug's development. In May 2021, we began a public campaign on social media to raise funds, and we have been fighting and campaigning ever since.
2022 has been an all-out war, but we have claimed a lot of victories and have been able to see a lot of miracles.
From January to April, Damian continued to steadily regress in his development. It's really shocking to think that at the beginning of this year my son could still talk. Damian's last word was "Daddy," and by February he was back to only babbling. He also lost his iconic hand-wave in January. In the meantime, I was pushing and pushing different parties (Damian's medical team, a pharmaceutical company, and the FDA) to finalize all the paperwork and sort through bureaucracy so we could access an experimental brain treatment for Damian.
Damian had his first surgery (he had an IV port placed in his chest to make his regular blood draws an easier process) and in April, we were finally able to give Damian his first dose of the experimental brain treatment:
Within just 2 weeks of starting this drug, I noticed more alertness in his behavior - he seemed more "awake," and for the first time in over a year, he wasn't rapidly losing skills and getting considerably physically and mentally weaker day-to-day. This is totally unprecedented in patients with this disease. While overall Damian is still much weaker now than he was this past January, the drug has allowed him to progressively gain some muscle & develop a little more cognitively for the first time since his regression began and there is no doubt that this "Brain Treatment 1.0" drug has bought us more time with Damian!!!
Damian turned 3 in May, which (because of government healthcare laws) lost us access to all of the vital therapies he was doing on a weekly basis (physical therapy, occupational therapy, speech therapy, feeding therapy, child development therapy, and group therapy). Months of making call after call to different insurance companies finally led us back into our therapy clinic in August. Damian now does physical therapy and occupational therapy twice a week and speech therapy once a week, which is certainly a full-enough schedule for Damian right now.
Early in August we were supposed to start the 2nd of 3 treatments Damian needs - but due to negligence (I won't sugar coat it) Damian's doctor didn't know there was a lot of paperwork and clearances and approval processes to go through in order to access the drug, and we were literally on the hospital bed in the infusion center ready to start before the nurse came in and told us that the doctor had just realized he hadn't done all he needed to do for us to start.
From August to December, I made countless calls and emails to a lot of people at the hospital from different departments, including the CEO and CMO, to the pharmaceutical company that owns the treatment, as well as the FDA to push through the bureaucracy and protocols as fast as possible, with repeated insistence that we start this treatment (Enzyme Replacement Therapy) before Christmas.
On Dec 23rd, we did it:
Unfortunately, this fall and winter Damian has fought a plethora of viral infections one right after another (multiple colds and RSV) and we unknowingly started Enzyme Replacement Therapy while Damian had a really bad case of the flu. We went to the ER the next day and spent Christmas and a couple days afterwards in the hospital as Damian got through the worst of the flu. This was Damian's 3rd or 4th trip to the ER this year due to escalated issues from common viruses and we are hoping that this new treatment (which is intended to "fix" all the issues in Damian's abdominal organs) will be a game changer. It is not likely to be a quick fix though, so to make up for some of his abdominal issues in the meantime, we will likely be needing Damian to undergo another surgery in the next couple months to place a feeding tube in his stomach or intestines.
It has been a long year to say the least.
But we've also made so much progress in our efforts to grow our campaign and raise funds for the 3rd and final treatment that we need for Damian. Some highlights have been:
Opening an online shop where we sell T-Shirts and Sweaters (which we've already shipped to over half of the states in the U.S.!)
Getting accepted into Amazon's Influencer program, which allows us to earn a commission every time someone clicks on an Amazon link we post (like this one) and then buys something!
Marching in our city's 4th of July Parade! (Damian loved it!)
Reaching over $960,000 in total donations for the Wylder Nation Foundation, the nonprofit that is developing the final treatment!
We are SO GRATEFUL for the help and the love and support we have received from family, friends, our growing online community of angels, and even from complete strangers that happen upon our story online or see our banners, signs, or shirts in person. The difference everyone's individual efforts, big or small, have made on this rare disease community is nothing short of miraculous.
Other 2022 Events & Updates
My life is filled nearly to the brim with caring for Damian and pushing progress forward with his fundraising campaign. But we have other updates as well.
After years of looking, we finally moved out of our 1-bedroom apartment to a rental house less than a mile away. It has been SUCH A BLESSING for Damian to have his own bedroom and to have a kitchen Brock and I can both be in at the same time! It really feels like home and we LOVE it.
Brock works 5-6 days a week as a professional stuntman at both Universal Studios Hollywood and Disney California Adventure theme parks, which he absolutely loves. Damian and I like to visit him at work when we can!
I still work from home for Thinkwell Group, which designs theme parks, museum exhibits, tours, etc. I've been working on the same project for a couple years now and it is supposed to finally open to the public in Japan this year!
3 of my siblings got married this summer, all in Utah, which meant we all got to travel and spend a lot of time with my family, which was really nice. Also, Damian looks SO cute in formal attire!
Looking forward with hope
With 2 treatments officially under our belts and one more to go, I couldn't be more grateful for the progress we've made in 2022. I'm so excited for the good things that are coming in 2023 and determined, more than ever, to save my son.
Wishing all of you a wonderful new year full of hope and strength.
Brittany, Brock, and Damian (age 3)
Please share our GoFundMe: LINK HERE
You can also follow Damian's journey and our mission to treat ASMD on social media: