Thank you for helping kids like Brian in the fight to cure A-T!
To our A-T CureTeam,
We are thrilled to have you join us in the 2021 Walt Disney World virtual races! I am Lauren Domitrovits, proud mother of Brian (9) and Andrew (6). Brian will be turning 10 – double digits – on December 29th! This may not seem like a big deal, but in the world of ataxia-telangiectasia (A-T), it is a very big deal! Let me shift gears and share a bit of our story with you, so you know why you’re running with us and the difference that you’re making!
When Brian began walking he never outgrew his unsteady gait. After investigating many reasons, we ended up having blood work done with a genetics team. We waited almost a year for results, and a month after Andrew was born we received a phone call that we will never forget. We had never imagined that the results would give this unsteady gait a name – ataxia-telangiectasia. Nor could we have imagined that the diagnosis would be such a devastating one. A-T is a neurodegenerative disease that combines the worst symptoms of muscular dystrophy, cerebral palsy, cystic fibrosis, immune deficiencies and oftentimes brings cancer. A-T is unrelenting and does not have a cure. In a nutshell, A-T impacts all body systems and means that Brian struggles with all things that we take for granted…walking, talking, eating, playing, focusing his eyes…the list goes on. To say that we were shocked is an understatement. We felt like our vibrant toddler was just stripped of the joyful future that he deserved. At the time of Brian’s diagnosis, the life expectancy for children with A-T was listed as “teen years.” I remember the darkness that enveloped me during those first days and weeks. It was an indescribable sadness and devastation that still resides within.
We connected with the A-T Children’s Project (A-TCP) and we threw ourselves into learning about A-T, and learning how to help the scientists and doctors that were searching for a cure. We met other families and other children with A-T, we formed relationships with them and we started focusing on hope. If a life limiting illness was going to be a part of our family, then we made a decision to make the most of this life. We began implementing a different mindset, and started building awareness and participating in fundraisers. The A-TCP is supporting scientists, researchers and doctors while they find life improving therapies and hopefully a cure for A-T. In the years since Brian was diagnosed, the life expectancy for a child with A-T has increased from “teen years” to “twenties.” This is a huge development and it is because of us, the friends, families and communities surrounding children diagnosed with A-T. We have joined forces and come together to raise the funds that the scientists and doctors need to research this awful disease and create treatments and a cure! So thank you for joining the A-T CureTeam and for joining in the battle against A-T. The A-TCP is a grassroots charity with a Volunteer President, Brad Margus, who happens to be an A-T father himself. We are a small group, but we are mighty!
Brian is a video gaming, Minecraft, Roblox and Pokémon expert who loves all gadgets and technologies. He has a creative mind, an extensive vocabulary and is always plotting a new scheme. He enjoys going on adventures with his family and playing with his little brother and his friends. He is a gift to all that know him because of who he is as a person. Unfortunately, Brian lost his ability to walk just over a year ago now. He is fully dependent on a wheelchair and we are experiencing the changes that come with this diagnosis. Brian has started asking many questions about A-T and his #1 is, “Will I walk again if I try really hard and practice?” By now, you and I know what the answer to that is. But, I would love to have a different answer for Brian and I would love if other children diagnosed with A-T never have to worry about these heartbreaking changes to their bodies.
What does this all mean for you? Well, by running for the A-T CureTeam and meeting your fundraising minimums, you are helping us work towards a desperately needed cure for A-T. By joining our team, you are helping us build awareness of this rare disease. Ultimately, you are a runner who is helping to fuel our hope. Last year was our first Walt Disney World Marathon experience and it was incredible for our whole family. This year it will look a little different as we all take on the Disney Marathons virtually from home, but we will still be making the same incredible impact. Thank you for choosing the A-T Children’s Project and thank you for being on the A-T CureTeam!
C’mon! Let’s race to the cure and run for the kids who can’t!
With love, thanks and so much hope,