Jul. 28, 2015
Posted by Heidi Ross
Howdy from Houston,
The drive from Mobile, Alabama was a bit of a nightmare. The I-10 was jammed for hours so I finally thought, “hey, lets just take some byways and side streets.” About an hour into this bad idea I lost cell signal and had no idea where I was going. All the technology in the world and I would have traded it for a paper map. Long story short, I made to Houston finally and couldn’t be happier.
The NORD State Ambassador here is the wonderful Riley Lee. Before I get to Riley’s bio, I can’t help but share some small examples of her work in the Houston area. Earlier this year, Riley attended a career day for 4th and 5th graders and talked to them about rare diseases, and about kids just like them who have been sick their whole lives. She had the students work on Rare Disease posters that would be shared with other children and families. Here’s a few examples:
About Riley, in her own words:
“My name is Riley Lee and I am a stay-at-home Mom to three kids. Jonathan, 21, Ryann, 8, and Reagan, 5.
My son Jonathan has a rare disease called PFAFA, and it took several years to get a diagnosis for him. I understand the frustration of knowing something is wrong but there is no answer. Even when you get a diagnosis, there may not be a “cure.”
My daughter Ryann had a cystic hygroma and survived Hydrops Fetalis before she was born. She also has Turner syndrome, Microcephaly, and many other issues. She is also considered “Undiagnosed” as they suspect another syndrome as well. She had a 1% chance of making it to birth. She is truly a miracle!
In the age of Social Media I have been able to connect with many other special needs families. That is what sparked my interest in rare disease. We do not all have the same diagnosis’ but we have many things in common. It’s wonderful to have a support system in place for helpful advice, encouragement on a bad day, new legislation, new treatments, and trials that are available. I truly believe that together we can make a difference, and we are strong!”
You can connect with Riley at (832) 813-9148 or by email at [email protected]
Next stop: Oklahoma City
Join the road trip on twitter with #RareAction
Want to learn more about the Rare Action™ Network and how you can join? Visit us on our website here.
About Tim Boyd
Tim is NORD’s Associate Director of State Policy. He lives and works in Washington, D.C. Feel free to reach out to Tim at [email protected] or at (202) 545-3830.