LAKE ANN, Michigan — Ellie Rosenberg loves sloths. She dabbles in Bluey. She has an affinity for her grandma, whom she must Facetime every night, and she treats her dad like a butler.
Normal five-year-old things.
“One of her favorite things is to give a high five,” said her dad, Matt, chuckling. “And she's a little selective, too.”
“Sassy in the best way possible,” Meg, her mom, agrees.
Ellie has grown up in a small town in Northern Michigan called Lake Ann. Population: just over 250 people.
In a town where new faces are few and far between, what is there to do but enjoy the scenery? Lake Ann boasts a lakefront park, walking trails and a brewery with outdoor seating under string lights in the summer to breathe in the fresh air of the surrounding pines.
Ellie, though, wouldn’t know. She’s never got the chance to enjoy it.
In the precious first months of their only daughter’s life, Meg and Matt noticed more was lost than pacifiers and sleep schedules. Missed were the milestones of Ellie’s infancy.
“We noticed around six months that she was a floppy baby. That's the best way to put it. Her limbs were really loose,” said Meg.
That’s when they turned to genetic testing. A turn that pivoted the world as they knew it.
“She is very specifically missing a piece of her seventh chromosome,” Meg said. “It's so rare that there's little information out there.”
“We didn't know what we were doing,” she said.
Ellie’s condition makes her muscle tone so low that she can’t walk or crawl.
As she grew from a baby to a girl, never seeing her take her first steps, her parents waited patiently for first words that also never came. Ellie was just recently diagnosed as nonverbal autistic.
Now, they’re each doing enough talking for two.
“We are speaking up for her every single day,” said Meg. “We have to kind of dig a little bit more because Ellie can't come home and tell us about her school day.”
While they may never know everything about their daughter’s condition, the Rosenbergs are sure of one thing – their daughter deserves independence.
Ellie currently sits in a child-sized wheelchair. When she goes outside to play with her friends, she’s in a stroller that she’s outgrown.
The stroller they need could follow Ellie through adulthood. It attaches to a bike and allows her to see the beautiful community she lives in.
The problem is the price tag. The stroller is nearly $6,000.
The Rosenbergs believe it’s necessary to get Ellie the life she deserves. Their insurance believes otherwise. They called it “a luxury” that they wouldn’t cover.
“This is an opportunity for people to really hear directly from a family how different it is. I mean, we go down every avenue we can,” said Meg.
Asking their community for help is not something Meg and Matt ever wanted to do. But it’s a necessity in what appears to be the full-time job of advocating for their daughter.
“It's humbling,” said Matt.
“It is very vulnerable to put ourselves out there and put Ellie's story out there. But we also know we're not alone. And there are other families like us,” said Meg.
“People ask us a lot like, ‘how can we help you?’ And that can be tough, that can be hard to answer that. But this is a way that people can come along and help.”
They’ve entered the Great Bike Giveaway to get their daughter her stroller. Through the contest, you can win by getting the most votes out of a nationwide competition. But the most surefire way of getting Ellie what she needs is by raising the donations for the amount of the bike.
What would that mean to the Rosenbergs?
“I could cry,” Meg said, through tears already. “It's one thing to have her out in her little wheelchair, it's another thing to have her out in this, where she might feel, or people might feel more comfortable.”
“It'd be life-changing because it means that we can get out, we can do things that are normal,” said Matt, “just being able to go have that freedom.”
Ellie Rosenberg has her sloths, her Bluey and her nightly Facetimes with Grandma. Freedom to give her high fives? Still in the making.
► You can vote and donate to Ellie on the Great Bike Giveaway here.
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