Our Annual Family Newsletter of 2021 Events
For the past few years, this blog has only served the purpose of hosting our annual end-of-the-year newsletter to update our friends and family on our fun but humble little lives.
A lot has happened in 2021.
Actually, last year's newsletter was posted exactly (give or take a day) when we first found out that Damian had elevated liver enzymes following a basic blood test. I didn't give it a second thought. I was sure it was something a vitamin could fix, like when you get your blood taken and are encouraged to take Vitamin D supplements for awhile. The pediatrician didn't seem (to me) to be too worried either, and said we'd repeat the test in January just to be sure it wasn't a fluke.
At the beginning of January, Damian started fatiguing really easily. We'd be eating dinner and halfway through his meal, Damian would relax into his seat and slump his head into the chair. That was so unusual for him that I started to wonder if there was a correlation between the elevated liver enzymes and his sudden and progressive loss of energy.
I don't need to rehash all the details (those can be found in this blog post). If you're reading this, it's likely you already know that Damian was hospitalized for a total of 2.5 weeks in February and March and was diagnosed later that month with a quickly fatal genetic disease called ASMD (Acid Sphingomyelinase Deficiency, aka Niemann-Pick Disease Type A or A/B), which is, among other issues, destroying his brain bit by bit.
As Damian's brain gets more and more damaged, we've watched him steadily regress from being able to pull himself up to stand on his own and starting to walk, copying a bunch of words and phrases (and no, he never did learn to say "Mommy"), eat solid foods and drink from a sippy cup, and so much more... to essentially living as a 3 month old again. Damian is again immobile and nonverbal. There are no words to describe the pain of watching this happen to my son.
This post is not meant to dwell on the intense and severe trauma all of this has been, so I'm going to switch topics a bit and list just some of the GOOD we've seen in 2021. Because it's changed my life.
Within a week or two of receiving the diagnosis, I found many wonderful people within the Niemann-Pick Disease community who all directed me to the Wylder Nation Foundation, the only organization laser-focused on developing treatment for Damian's exact issue.
After learning that treatment was already on the cusp of being available and only $3 million would expedite the research needed to save Damian's life, I began campaigning to raise funds and spread awareness (link to our GoFundMe here!). Within 3 days, our friends and family alone raised over $50,000!
Within the first month, entertainment and social media celebrities such as comedian Ryan Kelly and actress Amanda Seyfried shared Damian's story with their following and raised over $5,000 each within hours. Later this year, another influencer and dear friend held a live auction that raised over $10,000 for us!!
I dubbed June 10th "Crazy Day" after Instagram influencer and government teacher Sharon McMahon ran a day-long fundraiser on her Instagram account @SharonSaysSo and her following, "the Governerds" raised an overwhelming $400,000 for our campaign in a DAY, which took us to our first major funding milestone of $500,000! I am still in shock of the goodness of those estimated 18,000 donors!!! #GovernerdsUnite
Damian's therapists have each become family to us, have been the light of Damian's day, and truly the reason he has the strength that he does have left
We were invited to come on to "The Dr. Oz Show" for an interview about Damian's disease and the show aired December 27th! You can watch our segment here:
Our community in California, especially in our church, as well as the communities of Brock's family in Oregon have been incredibly supportive - running stories in a variety of newspapers and other publications, on the news on tv, and allowing us to campaign at community events (I spent nearly every weekend this past summer at our city's "Concerts in the Park" events raising money and handing out flyers). An incredible number of small businesses and individual families have held their own fundraisers to support our campaign! And so many friends from church have been providing meals to our family so that I can spend more time campaigning (and that includes creating blog and social media posts, filming reels and YouTube videos, writing emails and letters to influencers and celebrities, and designing printable and wearable flyers) and advocating (which includes phone calls and emails to government entities, doctors, research coordinators, pharmaceutical companies, applying for health care services, and more).
People are so good. It has blown me away to see countless strangers give so freely of their time, energy, and money to a young toddler most have never met in person.
To all of you who are choosing to help my son, who is my world, as well as a never-ending list of infants who have and will continue to be born with this devastating genetic disease:
I am vowing to see history made in 2022. We are going to raise the rest of the $3 million. Damian will start treatment. Damian is going to improve. And, God-willing, Damian will be part of the first generation of children to survive the brain-degeneration of ASMD. I can't wait.
How Brock and I Are Doing
It honestly feels weird to talk about anything other than Damian's campaign. Damian's health and prospect of treatment is truly all I think about. Which does make the rest of my life feel incredibly unimportant at best, if I'm being honest. But for the sake of the annual family newsletter, here's our 2021 report:
I (Brittany) am still working as a design manager for a company that designs theme parks, museum exhibits, etc. I still love the work and I am forever grateful for my employer's unequivocal support and understanding of our situation. I have dropped my hours from a full 40 hours to 8-15 per week, but even spending those few hours a days working (from home) with people who are also dear friends is a blessing.
The rest of my time is spent taking Damian to doctor's appointments or to therapy (he does physical, occupational, speech, child development, and group therapy all either once or twice a week, and we're adding feeding therapy in a couple weeks!) or talking on the phone to hospital and clinic appointment schedulers, medicaid workers, insurance agents, doctors, the Wylder Nation Foundation, and more. Damian is used to watching me talk to the magic black box (my phone) on speaker while I help him eat, drink, and play with toys and, since he's quite the social personality himself, he doesn't seem to mind the constant talking.
Before all the crazy started this year, I was really enjoying teaching all the children in our church congregation ages 3-11 music for an hour every Sunday (during the pandemic shut down, I made monthly YouTube video lessons) but now I volunteer in the Church nursery instead, which is good because Damian can go too and interact with the young children his age. It is very cute and I love watching Damian light up whenever he's around his "friends!"
In August, I decided to film one of our typical days, which you can see below! Unfortunately Damian has regressed a bunch since this time and no longer says "Let's go!" or army crawls like he does in this video. But every day is just as busy!
Brock has made amazing progress in his profession as a stunt performer! He's had the opportunity to be part of the opening cast of a new stunt show at the Disneyland Resort as well as join the legendary cast of the Waterworld stunt spectacular at Universal Studios Hollywood! He alternates between the two shows all week (sometimes even doing both in one day!) and on the rare days he's not scheduled at either one, he works as a delivery driver for Amazon (they have been wonderful to be so flexible)! Brock works 6 days a week, but I am so grateful that he is firm in his conviction to not work on Sundays.
Our best days are when Damian and I get to go see "Daddy at work" or when all three of us schedule a day off and get to play at his "offices" as a family. This year we've gone to Universal Studios to watch Brock in Waterworld once, and Damian and I have gone to Disneyland a total of 5 times!
In addition to doing stunts in live shows, Brock also starred in a crowd-funded production of "Outlaws," a potential DC Comics-inspired TV series that will be pitched to Warner Bros. in 2022. Brock played his dream role, Jason Todd, aka "Red Hood," a vigilante "anti-hero" and the adopted son of Batman. The role required Brock to dye his hair black, so that was a fun change for him! Here are some promotional images from the project showing Brock in his custom-made suit:
Brock still puts a lot of energy into bodybuilding as well and competed in one show this year in the professional division. He says it will be his last show for awhile so that he can really put on a lot more size (which takes a lot of time) before he competes again.
Happy New Year!
I cannot tell you how anxious I am for a list of things to happen in the first half of 2022.
The first and most readily-available experimental treatment for Damian's brain degeneration is in the works, and every ounce of me is trying to push progress forward. The only reason it wouldn't begin in January is because of inefficient communication, so you can bet I am doing everything I can from a project management perspective (and a "mom with a mission" perspective!) to expedite this work. Since we don't know how effective this first treatment will be, continuing to fundraise and spread awareness so that we can get the rest of the $3 million collected before June is my resolution for this new year.
Thank you all SO SO much for supporting our family, my son, as well as every baby fighting ASMD and their families, by joining us in this fight.
So many of you have reached out personally and asked what you can do to help. Thank you so much. The #1 thing you can do to help is to help me fundraise and to spread awareness with your family, friends, and your community.
Fundraising can be as simple as doing a birthday fundraiser on Facebook (for the Wylder Nation Foundation), using Amazon Smile when you shop online, or helping your kids do a lemonade stand on a Saturday. Spreading awareness can mean sharing my social media posts and GoFundMe campaign link, creating your own posts on social media, handing out flyers at your garage sale or taping them to your window or leaving them on your table at restaurants, or getting your own car magnet and/or yard sign.
I know we can save my son's life. I know we can. I'm hoping and praying with all my might that by this time next year, I can ecstatically report progress of Damian's healing and regrowth. 2021 was without a doubt the most devastating year of my life. But it was also the start of a journey of miracles and I just know they are going to keep on coming.
So much love to you all and praying for the best to come to each of you in 2022,
Brittany, Brock, & Damian (age 2)
Please share our GoFundMe: LINK HERE
You can also follow Damian's journey and our mission to treat ASMD on social media: