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Twin Cities family raises awareness about 2-year-old daughter’s rare condition

<i>WCCO</i><br/>A Hanover family is on a mission to find a cure for a rare genetic disorder their daughter was born with
WCCO
A Hanover family is on a mission to find a cure for a rare genetic disorder their daughter was born with

By Pauleen Le

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    HANOVER, Minnesota (WCCO) — A Hanover family is on a mission to find a cure for a rare genetic disorder their daughter was born with, and they’re asking for your help.

Teegan Olson will soon turn 2 years old, but she still has yet to reach major milestones, including walking and talking, and she might never be able to do so because she was born with an MEF2C gene mutation.

She’s the youngest of three daughters to parents Kelly and Matt Olson.

She’s so happy,” Kelly Olson said. “She doesn’t know anything’s wrong.”

Much of Teegan’s life so far has been filled with doctors’ appointments and tests.

“No one knew,” Kelly Olson said. “So they’re like, ‘Well let’s do this, let’s try this,’ and everything was coming back normal.”

After about a year-and-a-half the Olsons finally received an answer. Earlier this year, Teegan was diagnosed with an MEF2C mutation, a genetic disorder so rare only about 350 people are known to have it in the world and many of them are children.

“It was hard to take that in,” said Matt Olson.

“It was very terrifying to have a doctor say, ‘This is what she has, but we don’t know much about it,'” Kelly Olson said.

Of the little that’s known about it, experts said the gene mutation can impact brain development, physical mobility and cause seizures. Teegan may also never be able to speak.

“I think that’s scary for us just to know that she may not be able to be independent,” Matt Olson said.

“It is,” said Kelly Olson. “Just to know that something is wrong, or she might not be able to do things that we have hope for her.”

Teegan now has therapy sessions five days a week.

“There’s little milestones that she does hit, just like with standing more and she’s getting better at eating,” Matt Olson said. Scientists in Europe are working on a potential treatment, but unfortunately there is no cure.

“Knowing there wasn’t a cure, I think kind of pushed me,” Kelly Olson said.

“We’re kind of jumping all in,” Matt Olson said.

READ MORE: Little boy battling rare disease to receive life-saving bone marrow transplant

Kelly Olson now serves on the parent board for the newly formed American MEF2C Foundation, working to raise awareness.

They’re also planning a volleyball tournament on Saturday in Elk River, with proceeds going to the foundation for research. Sign up is still open for anyone interested.

“It’s been humbling for a wide variety of people in our lives that end up contributing or donating,” Matt Olson said.

“It means the world to us,” Kelly Olson said.

The Olsons continue to hold on to hope that one day Teegan can grow up just like any other kid.

“We say just hearing her little voice say mama or dada,” Matt Olson said.

“For us, we just want her to live her life being happy and knowing and thinking and realizing she does have a normal life, it’s just a different normal,” Kelly Olson said.

The Olsons are also encouraging anyone with a rare disorder to make sure it’s documented on Simon’s Searchlight, an international database scientists can help their research.

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