Sheri grew up riding horses on her parents’ north central Oklahoma farm, alongside her two younger sisters. Despite challenges with her health and mobility constraints, Sheri’s family always encouraged her to live life beyond perceived limitations. That spirit continues to be the north star for Sheri, particularly as it relates to her journey with Morquio A (MPS IVA).
Sheri was diagnosed with the rare disorder Morquio A at age six, after four years of mischaracterizations and false starts. Due to the rarity of the condition, Sheri went years before connecting with the MPS community or even meeting another person who could identify with her experience.
“I didn’t meet another little person until I was in college, and I was 33 when I met another person with Morquio.”
Once connected with the broader community, Sheri jumped in with both feet as she does with all aspects of life she’s passionate about. She joined Facebook groups and began attending The National MPS Society’s annual conferences. And in true Sheri fashion, she took her commitment one step further and joined the Society’s Adult Resource Committee. In 2018, she also joined the Society’s Board of Directors and now serves as Board’s liaison.
“We do a lot of fundraising and outreach and education for our adults with MPS. I wanted to help others get to where I was without having to deal with all of the roadblocks that I had to get around. I have access to a lot of resources that I can connect people to because of my position.”
Sheri understands the emotional rollercoaster families may go through when they first receive a diagnosis of Morquio A, and she makes herself available to anyone with questions. She describes her most important piece of advice to parents of a newly diagnosed children is to let their kids just be kids.
“Don’t put your kids in a bubble. We have enough limitations as it is. Let them experience all that life has to offer, and let them tell you what is too much.”