Avery's 21st Birthday Wish: DMD Conference

Today is an incredibly special day. Avery turns 21.

Just before his third birthday on Valentine’s Day, 2007, our family received the news that changed our world forever. Avery was diagnosed with Duchenne Muscular Dystrophy (DMD). DMD is a progressive neuromuscular disease diagnosed in childhood. At the time he was diagnosed, there was very little hope and we were told life expectancy was late teens, early 20s. There is currently still no cure for Duchenne, but over the last 18 years since his diagnosis, they have made great advances in treatment and disease management.

For many years, Avery struggled with accepting his diagnosis. As his peers hit milestones, his body went through reverse milestones. He had to learn to mourn them at a very young age. He has had many medical challenges over the years and also faced several emotional challenges along his journey. Ultimately, at the age of 21, he has reached a self-realization that many in the world continue to chase and never find. He is a remarkable young man.

His wish this year is to attend the Parent Project Muscular Dystrophy conference in Las Vegas this coming June. Connecting with other young men, families, and the medical community is a huge step for him as he desires to become a strong advocate and voice for those living with DMD.

As his disease has progressed, the expenses have continued to mount, and our broken healthcare system has been a barrier to providing durable medical equipment and other supports that provide quality of life. Our latest expense was the recent purchase of a new accessible van so he can continue to access the world. As a single mom, raising two children on one income is always a challenge, but the extra added expenses of caring for someone with a progressive, life-limiting illness is beyond what most families encounter.

Today, with a humble heart and tremendous gratitude that my incredible son has made it to his 21st birthday, I ask you to consider donating to make his wish come true. Traveling has become extremely difficult but because we have found accommodations in Las Vegas that go above and beyond with the level of accessibility he needs, it is a true possibility.