AUSTIN (KXAN): Most parents walk through life waiting and waiting to be there for every significant milestone in their children’s lives.
Graduating from high school and college, small league games, dance performances, marriage – parents ’love is really like no other.
But what happens when parents receive news of the day their children are born, they have an untreated illness, is irreversible and fatal.
This is the news Central Texas parents Laura and Timothy Revell received about their two children, Andrew and Timothy, when they were diagnosed with Duchenne muscular dystrophy.
The disease is caused by a genetic mutation that causes muscle breakdown and weakening, which eventually causes problems with walking, breathing, and a functioning heart.
“You have that little window when they’re young to appreciate a certain sense of normalcy, and as the years go by, the effects start to occur,” Tim Revell said of his children. Although the diagnosis has significantly affected their lives, the father of two children and his wife have not allowed the diagnosis to weaken them.
The Revells have led a charge through the national nonprofit organization “CureDuchenne” to raise awareness and earn money to investigate what the disease is and move forward to discover a cure.
“Because it gives us an opportunity for hope,” Revell said. We move forward and we don’t stop.
Revell himself has participated in the Austin Marathon for more than 15 years to raise money for the cause and always enjoys his annual tradition of bringing his children to the finish line.
When the COVID-19 pandemic forced the event to split, it also ran the Austin Half Marathon.
“We can’t stop because of COVID,” Revell explained. “COVID is what it is and our mission remains what it is.”
The pandemic canceled one of the key fundraising events they organize annually, their Champions to CureDuchenne gala last year. The family hosts a night of food, silent and live auctions and fundraising games to support additional research to find a cure.
“During the pandemic, families were forced to go home and be with each other, and that’s what our family has known for a long time,” he said. Although they participated in virtual events and were able to continue raising money throughout the pandemic, they are grateful to be able to organize their face-to-face event this year.
“A lot of people have experienced or felt the feelings that we parents of children with this disease have experienced for years, which is despair for life and concern for their health,” Revell said. “Do your best to provide safety and health and well-being to your loved ones.”
That’s why they’re looking forward to Saturday’s event.
“Like the pandemic, there is a race for the vaccine or a curative treatment,” Revell said. They have funded more than $ 2 million for the Duchenne research with the help of the Austin community.
“We’re seeing this shift from trying to figure out what this disease is to‘ we’re looking for people who can create drugs or compounds for treatment, ’” Revell said. He later added that one of his children, Timothy, is participating in a two-year clinical trial for a drug compound to improve upper extremities and lung and heart function. They expect the treatment to end up receiving full FDA approval.
“Why do we keep doing it?” Revell asked. “We have hope.”
If you want to take part in the life-changing mission with the Revells, you can take part in their auction until Saturday or make a donation to the CureDuchenne website.
“We need people to be behind us and support us, once people have a look at how much love parents exert on their children, people want to support that,” he said. Revell.
“It’s really a mission that extends far beyond our family.”