MICHIGAN, USA — You can see the joy in Dr. Mat Edick's eyes when he starts talking about his two kids. He says his son Elijah brings a lot of other people joy, too.
"When people see my son, they tend to fall in love with him instantly. He's almost always smiling. He is unable to pass judgment on people," Edick said.
"He just will unconditionally love you, talk to you, or give you a hug. And he always seems to know exactly the person that needs that hug."
But what most people don't see is how Elijah navigates the challenges that are part of his condition, Down syndrome.
"You don't get to see what happens when he's not getting his way, or what happens when we have to have a medical procedure that requires him to be restrained, or requires you to touch his face, for example," Edick said.
"He has tremendous sensory issues from when he was little. He's had 20 surgeries or so. So he's been restrained a lot."
Even something as simple as going to the dentist or getting a haircut can be a daunting task for Elijah.
"I brought him to go get his hair cut, and he fought so hard to not let the clippers touch him that he ended up with bruises on him," Edick said.
The National Organization for Rare Disorders considers Down syndrome to be one of thousands of rare diseases. Feb. 28 is "Rare Disease Day," which raises awareness about each of those conditions.
But as the Director of the Center for Strategic Health Partnerships at the Michigan Public Health Institute, Edick says regarding rare diseases goes beyond raising awareness.
"Professionally, what I would love to see happen out of days like this is for it to be used as a conversation starter," he said.
"There's a lot of really smart people. There's a lot of really driven people. There's funding out there if you know how to get it. So we can do great things, and days like this act as a catalyst, I think, for furthering existing work and launching new work in that space."
Edick also wants to achieve equity for people with rare diseases and their families.
"That equity can be access to health care, access to treatments, access to diagnosis that other individuals have, and individuals with rare disease don't. It could be around social equity, opportunities for education, for jobs, you know, programming in the communities, things like that," he said.
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