Trip of a lifetime in the works for Des Moines 4-year-old with terminal genetic disease

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DES MOINES, Iowa — A rare genetic disorder has brought much heartbreak to one Des Moines family.

Over the last year they’ve watched their four-year-old daughter lose her ability to walk and talk, and doctors say the disease will likely take her life.

Now her family, and strangers, are hoping to make the most out of the time they have with her.

Maggie Larson can’t do all of the same things as her twin brother, Will. “She can’t go ride bikes, she can’t go play like other kids,” said Maggie’s mom Heidi Larson.

Maggie started walking at 20-months-old, long after her twin started taking his first steps.

“We used to have a walking talking toddler who could speak in full sentences,” Heidi said, “It seems like overnight, she couldn’t sit up anymore she couldn’t talk anymore.”

Parents Heidi and Samuel Larson’s concerns started growing as the gaps between Maggie and Will grew. “Symptoms started with her eyes going crossed,” Heidi said.

In early 2020, Maggie was diagnosed with metachromatic leukodystrophy or MLD, a terminal genetic disease that eventually took away Maggie’s ability to walk, speak, and eat on her own. The rarity of the disease means there’s no cure.

“We don’t know how much time we have. So, I just wanted to make the best of it.  Give her every experience you can,” said Heidi.

One experience they want to give her is a trip to the New York Bronx Zoo, home of Maggie’s favorite Animal Planet show, ‘The Zoo’.

“We were watching the penguins. And it just, I just noticed that when we were watching, she was calmer, she was more relaxed,” Heidi said.

Heidi reached out to staff to let them know the difference their show was making for Maggie.

“They are giving her some normalcy and some joy in the midst of what’s so hard,” said Heidi.

From there, a special friendship formed.

“She started sending us videos,” said Heidi, “It just developed in this beautiful friendship and they’ve really become family.”

With the help of generous friends and a GoFundMe campaign online, the Larsons are one step closer to making Maggie’s dream come true.

“We want Maggie to have as normal as a life as she can. And this is something that she loves. And she loves these people,” Heidi said. “As horrible as this is, we see grace in every day, we see something to be hopeful for something to be happy about and that’s what gets us through.”

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