AUSTIN (KXAN) — Most parents walk through life expecting and hoping to be there for every significant milestone in their children’s lives.
Graduating from high school and college, little league games, dance performances, marriage — a parent’s love truly is like no other.
But what happens when parents receive news from the day their children are born they have a disease that has no cure, is irreversible and fatal.
That’s the news Central Texas parents Laura and Timothy Revell got about their two sons, Andrew and Timothy, when they received their diagnosis of Duchenne Muscular Dystrophy.
The disease is caused by a genetic mutation that causes the breakdown and weakening of muscles, which eventually leads to trouble walking, breathing and for the heart to function.
“You’ve got that small window when they’re young to appreciate some sense of normalcy, and then as the years progress, the effects really start taking place,” said Tim Revell about his sons. Though the diagnosis has significantly impacted their lives, the father of two and his wife have not allowed that diagnosis to debilitate them.
The Revells have led a charge through the national nonprofit “CureDuchenne” to raise awareness and money for research into what the disease is and to move forward to discover a cure.
“Because it gives us an opportunity for hope,” said Revell. We move forward, and we just don’t stop.
Revell himself has run in the Austin marathon for 15-plus years to raise money for the cause and always delights in his annual tradition of carrying his sons across the finish line.
When the COVID-19 pandemic forced the event to be split, he ran the Austin Half marathon as well.
“We can’t stop because of COVID,” explained Revell. “COVID is what it is and our mission is still what it is.”
The pandemic knocked out one of the pivotal in-person fundraising events they host annually, their Champions to CureDuchenne Gala, last year. The family hosts a night of food, silent and live auctions and games to raise money to support further research into finding a cure.
“Over 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. Though they participated in virtual events and were able to continue raising money throughout the pandemic, they are grateful to be able to host their in person event this year.
“A lot of people have experienced or felt the feelings that we as parents of boys with this disease have been experiencing for years — which is the desperation for life and the concern for your health,” said Revell. “You do whatever you can to provide safety and health and well being to your loved ones.”
That’s why they’re looking forward to Saturday’s event.
“Much like the pandemic, there’s a race for the vaccine or a cure treatment,” said Revell. They’ve funded over $2 million for research into Duchenne with the help of the Austin community.
“We are seeing that shift from trying to figure out what this disease is to ‘let’s find people who can create drugs or compounds for treatment,'” said Revell. He added later one of his sons, Timothy, is participating in a two-year clinical trial for a drug compound to improve upper extremities and lung and heart function. They’re hoping the treatment will eventually receive full FDA approval.
“Why do we keep doing it?” Revell asked. “We have hope.”
If you would like to participate in the life-changing mission with the Revells, you can participate in their auction happening through Saturday or make a donation on the CureDuchenne website.
“It takes people standing behind us and supporting us, once people get a glimpse of how much love it takes exerted by parents into their children, people want to support that,” said Revell.
“It is truly a mission that extends well beyond our family.”