Other end of the tunnel: True reality of hope is effort

Raising Rare

On this episode in our Other End of the Tunnel Series we are joined by Mark Dant. When their son was just three years old, Mark and his wife were told that their son would pass within the decade after his diagnosis of MPS 1 and the lack of treatments available. As they laid on his floor listening to him breathe on the night of his diagnosis, they buried the home that might have been and the dreams of the life that was no longer possible.

As Mark joins us today, his son is now 35, married, recently bought a home and is still having the journey that they never thought he would be able to experience.

What started as a bake sale raising just a few hundred dollars led them down a path that led to a scientist. Everything they did at the moment regardless of how small of insignificant it seemed, and over the next 30 years, culminated to what is happening now. That scientist and his dedication led to a treatment just 8 weeks before Ryan’s 10th birthday that forever changed the course of their life. More importantly, that scientist has remained present in their lives throughout all of Ryan’s milestones. He was present at his High School graduation, his college graduation, and even recently at his wedding. That scientist’s dedication and commitment pushed the science to a treatment for Ryan and that treatment allowed the development of treatments for so many other children with similar rare diseases.