Katie: My child, he was diagnosed
six years ago with bone marrow failure.
He wasn't responding to the front line therapy for it.
His doctor decided to do telomere length test.
Then we had a second diagnosis of an extremely rare disorder.
The telomere has the same function as an aglet of a shoelace.
If you can picture what an aglet does, it keeps the shoelace from
unraveling and the telomere does the same function essentially.
As you age your telomeres shorten but ours
are already starting off with extremely
short telomeres and so it's a multi-system
failure, multi-organ failure.
Team Telomeres has been around 10 years
and I took over three years ago.
We really put ourselves in the advocacy research outreach.
I have found that no matter what the diagnosis
is, we all have the same stories essentially.
Now we're finding overlap with other diseases
and I think that is a huge thing for
a rare leader to see the crossovers in certain
diseases and how can we work together.
Riley is an anomaly in our community.
He really is one of the healthiest patients.
He's 18 now, he just graduated high
school, he is four years post-transplant
from an unrelated donor and he's still here with us and he's thriving.
You share your story, one, to empower yourself, you share
your story so that you can connect with others and so
others can find you, and you share your story so that maybe
you're helping somebody else that's coming down the line.