Amelia Decker and Aron Schmidt are chairing the first Rare Disease Day event in Tucson inspired by their experience as parents to 3-year-old Everett who has a rare genetic disorder. 

In September 2018, Tucson couple Aron Schmidt and Amelia Decker received life-changing news. 

Their son Everett, now 3 years old, was diagnosed with an extremely rare disease called MECP2 Duplication Syndrome, a genetic neurological disorder that affects all aspects of his life, including his immune system, his cognitive ability and his ability to walk and talk, Schmidt says. 

The condition is so rare that the family has not met or heard of another person with the same disease in Southern Arizona and Decker, a pediatrician, had never even heard of it before Everett's diagnosis. 

"It was an unbelievably, traumatic, awful experience to hear bad news like that," Schmidt recalls.

After spending the weekend researching the disease on the internet, filled with worst-case scenarios, the couple turned their attention to finding the best doctors and care for Everett, who requires several medical and therapy appointments each week. 

"It's a journey we don't wish on anybody," Schmidt says. "But there are a lot of people who have really rare diseases."

For the first time ever, Tucson will be part of Rare Disease Day, a worldwide event that happens on the last day of February to raise awareness about more than 6,000 rare diseases and those impacted by them. A rare disease is defined as a condition that affects less than 200,000 people in the U.S., Schmidt says. 

The local event came together through the work of many people and organizations but is spearheaded by Schmidt and Decker.

After Everett's diagnosis, the couple started their own foundation to support MECP2 Duplication Syndrome research and advocacy and were inspired to create a larger community event encompassing all rare diseases from their experience. 

"Tucson has been so good to us in supporting our own foundation... we had to do something to give back," Schmidt says. 

More than 300 million people, or one in 20 people, have a rare disease and around 70 percent of those are diagnosed as children, according to the Rare Disease Day website

Tucson's event will take place at the Children's Museum Tucson downtown on Saturday. The event will have free admission for the entire community and a resource fair with more than 20 organizations that will share information and resources with families affected by rare diseases and spread awareness for those who are not. Tucson kid-favorite performer Mr. Nature will also be on hand to perform at noon. 

Schmidt says the event will be an opportunity not only for families to connect to local resources but also build community with other families who have similar experiences. For those who are not affected by a rare disease, it's a chance to learn more about the work different organizations are doing in the community, Schmidt says. 

"For those of us affected by a rare disease, we are stronger together," Schmidt says. "We hope Rare Disease Tucson provides a chance for our community to rally around those affected by a rare disease." 

If you go

What: Rare Disease Day Tucson

When: Saturday, Feb. 29, 10 a.m. to 2 p.m.

Where: Children’s Museum Tucson, 200 S. Sixth Ave.

Cost: Free

More info: Go here

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