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Olivia E.

Until the streetlights come on

Growing up in medieval times (aka, pre-smartphone era), we played outside all day until the streetlights came on.

Those streetlights were everything and gave many of us those first moments of independence. The freedom that came with playing outside with your friends without the watchful eyes of any adults was a childhood rite of passage.

And when those lights began to illuminate, you got a final warning that you were getting close to being late without risking the wrath of your parents. It was the universal signal that it was time to go home. 

As a kid, Olivia Eiger spent all day outside in those glorious moments before dusk. She has always been a girly girl, wearing frilly pink dresses, taking dance lessons, and bringing groups of friends together to hang out.

“Her social calendar was always packed,” her mom, Erika, laughed. “She was always doing something — competitive swimming, girl scouts, having friends over — all of it. Every summer, she was out until the streetlights came on.”

Life was good, and busy, and filled with love. That’s why it took some time for Erika to notice that something was going on with her husband. 

“He had these little ticks,” she told us. “But they were so imperceptible at first that it took me a while to notice. We went to his primary care physician and then a neurologist, but the initial tests were inconclusive.”

“Later, his memory started to get worse. His movements started to get worse. And then a young doctor at Wake Forest said, ‘I think it might be Huntington’s disease.’”

The pair had never heard of Huntington’s and had no idea what that might mean. But they moved forward with the recommended genetic testing – and it came back positive. 

“We were devastated,” Erika told us. The diagnosis came in 2011, and her husband valiantly fought the life-altering symptoms for more than a decade before passing away in 2020. He was just 47 years old.

Unthinkably, this was around the same point that Erika noticed some changes in her daughter Olivia, too.

Olivia was nearing the end of sixth grade when Erika saw that she was writing with her right hand. That was strange because Olivia is left-handed. Erika also noticed that her speech was getting worse, but she had recently gotten braces and thought it might be related.

“When I asked her about her handwriting, she told me her left hand wasn’t working very well,” Erika said.

With a pit in her stomach, Erika scheduled a well-check and the pediatrician agreed that something was definitely up. She referred them to the neurologist, and once again, Erika sat beside her loved one and waited for genetic testing.

The result was the same: Olivia was diagnosed with Juvenile Huntington's disease (HD) on April 15, 2019, only 10 days before her 13th birthday.

Juvenile HD is a less common, early-onset form of Huntington disease. Most often, children inherit the genetic change from their fathers, as was Olivia’s experience.

The disorder is progressive and life-limiting, usually within 10 years of diagnosis, and causes the breakdown of brain cells and resulting in uncontrolled movements, loss of intellectual abilities, and emotional disturbances. Erika didn’t know what her daughter’s future would be, but she knew it was much different than anything she had imagined or hoped.

“Really, despite all of it, Olivia is still that happy, happy kid,” Erika shared. “Her speech is a little harder to understand, and she’s mostly g-tube fed now, but we took a trip to Universal Studios last year, and she was there from open to close.”

That trip was part of a bigger outing to the Juvenile Huntington’s conference in Orlando, a community of families battling this awful disease together. Erika has been actively involved since shortly after Olivia’s diagnosis when she began looking for online support groups. 

It started when another mother, Londen Tabor, reached out to ask Erika to join the Help for HD support group. Her daughter Autumn was also diagnosed with juvenile HD after her father passed from the disease, and the pair have amassed a large following on TikTok where they share moments of joy and real life – “and not just the sad stuff.”

“They became my tribe,” said Erika. “I couldn’t survive without them.”

It goes beyond support, though having a shoulder to cry on or another mom to call and troubleshoot has its benefits, too. The group is active in raising awareness for juvenile HD in hopes of more research and a future cure.

Not long ago, the FDA granted them a listening session and Erika was one of 7-8 parents who spoke on behalf of their loved ones. They’re hoping to push for more clinical trials. They’re hoping to change the future for their family members. They’re hoping.

“You have to do whatever to make your kids happy,” said Erika with a small smile.

Erika does that in so many ways, and one of them was putting Olivia on a two-year waitlist for hippotherapy. Eventually, she was paired up with an incredible horse named Fritz, and the two have been working together for about 18 months now. It helps keep the smile on Olivia’s face (the therapy part is just a bonus).

When Erika started to hear more about service dogs and how they benefit teens like Olivia, she set her sights on securing one for her daughter. Whatever it takes to make her happy.

Olivia’s symptoms have progressed to where she now has a hard time walking up and down stairs, picking up dropped items, dressing herself, and performing her daily tasks independently. But as she approaches adulthood, Erika is fighting to support her daughter’s independence as much as she can. It’s critical to her confidence and sense of self. 

The family researched and applied for assistance to help cover the cost of a service dog, which would be prohibitively expensive with everything else they’re juggling. Olivia received a scholarship to cover the majority of the cost ($20,000), but there was still $7,500 left to fund.

One day, Erika was scrolling through the juvenile HD community pages on Facebook when she came across a post from another family. 

“A woman posted about how amazing this organization called Chive Charities is and how they purchased a wheelchair-accessible van for her two loved ones,” Erika told us. 

When Erika found our website, she was hoping she found the answer to that remaining gap for Olivia’s service dog from an amazing organization called Eyes, Ears, Nose and Paws (EENP).

Through the generosity of an incredible community of donors, we received their application and were able to approve the full cost of $7,500 to help make Olivia’s service dog a reality. 

On June 24, 2023, a two-year-old part Labrador, part Golden Retriever came home to complete their family and support Olivia. His name is Larry.

“Larry is just incredible,” Erika laughed. “He can retrieve items for her, help her walk, and is working on ‘go get help’ right now.”

He’s also bringing some healing back to their home. Erika, Olivia, and her older brother, Joey, lost their dog Bailey last June – she was almost 16 years old. Larry is a big dose of cuddly comfort (and therapy) that they all needed and deserve. Whatever it takes to make her happy.

If life is like a day spent outside playing with your friends, Olivia is still out there, happily dancing and making the most of her time. And when dusk inevitably comes and the day winds to a close, she’ll watch as the streetlights come on, calling her home.

Thanks to people like you, we bet Larry will be right beside her, showing her the way.

There are dozens of hopefuls out there waiting for a little help to make their lives infinitely better, just like Olivia. Individuals who are trapped and would like nothing more than to enjoy life until their streetlights come on. Will you help change their lives, too?  DONATE HERE.

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