Doug and Kasey sat at a conference table as a team of doctors broke the news: Their then 18-month-old son had a rare disease that was causing him to fall and be unable to get up.
A few days earlier, Kasey had rushed their son, Will, to the Emergency Room at Children’s Medical Center Plano after one of these falls, knowing in her gut something wasn’t right.
Doctors told the couple that the rare disease -- called Leigh syndrome, which impacts only a few thousand people in the world -- was progressive, had no cure and many patients didn’t live past the age of 10.
And ever since then, for the last seven years, Doug and Kasey have been trying to save their son’s life.
“I don’t think any parent could accept that there’s no cure for your child,” Doug said. “We had to do what we could to try to find an answer.”
They emailed academic researchers in the United States and internationally. They called drug companies. They drove to different cities in hope of an experimental treatment.
But every answer was the same: “There’s nothing we can do to help you.”
Kasey and Doug have watched their now 9-year-old son lose the ability to walk, lose the ability to swallow and eat food and lose the ability to speak. They monitor his various medications and feeding tubes, while also caring for their youngest child, Lauren. And every night, one of them sleeps in a twin bed in Will’s room.
The family found hope in 2018 when their neurologist told them about the development of a Gene Therapy program starting at UT Southwestern in collaboration with Children’s Health.
“We had reached out to many top medical institutions, hospitals and researchers throughout the country, but Children’s Health was the one that was willing to say, ‘Yes, we can help you,’” Doug said.
But the couple would need to raise hundreds of thousands of dollars to launch the experiments and another $1 million for human trials.
It wasn’t a cure – only an experiment. They don’t know if it will work. And they don’t know if it will manifest in time to help their son.
But they had to try.
“To go from being diagnosed with this ultra-rare disease, where we thought, ‘How unlucky can we be?’” Doug said. “To having this potential miracle breakthrough presented to us right in our own backyard in Dallas, it feels like we hit the lottery.”
Kasey and Doug are fundraising not only to save their son’s life, but for the lives of other children and families like them navigating a rare disease diagnosis.
So far, the family – joined by other rare diagnosis families – have raised more than $1 million and hope to have a clinical trial launch soon.
“We tell Will about this therapy that we’re fundraising for. We tell him that we don’t know what the results are going to be. But he knows there’s hope,” Kasey said.
“We survive on hope.”
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