Hope for Livi: One family's commitment to raising awareness, preparing for eventual treatment

In any given moment, without warning, life can change radically for 2-year-old Olivia Roy.

Livi might be wiggle dancing to the Mickey Mouse theme song or catching magnetic fish with a plastic pole when, suddenly, she can no longer move normally, or she becomes gripped by painful muscle spasms.

This endearing little blonde, who loves music and is learning to walk by clutching her parents’ fingers, has a rare genetic disorder called alternating hemiplegia of childhood, which affects only about 300 people across the country and can afflict over a person’s lifetime, not just in childhood.

What AHC means for Livi is that she has occasional episodes of hemiplegia or quadriplegia, meaning she has paralysis on one side of her body or in all four limbs. She can also experience painful muscle contractions, called dystonia, and these episodes can last from three to 10 days.

“If you notice it fast enough and can get her to sleep, there’s a chance you can stop it,” said Livi’s mother, Christy Roy of Alton. “But usually for Livi, when it starts, it’s going to continue.”

While Livi has mastered nearly a dozen words, she does not yet understand what’s happening to her, nor does she have the words to express her confusion or frustration. Instead, she is apt to show her parents a limp arm as if to say, “This isn’t working. What’s going on?”

The physical and emotional pain their child bears is heartbreaking for Christy and her husband, Brian Roy. “Words can’t describe how we feel, and it doesn’t get any easier or better with time,” Christy said.

Raising dollars — and awareness

To help Livi and raise awareness about the complex disorder, the Roys have launched a $1 million fundraising campaign. They are also hosting events to raise dollars, such as one featuring The Rockin' Daddios, a Laconia-based doo-wop band, slated for Saturday, March 18, in Wolfeboro. The event has sold out, but donations are welcome at gofundme.com/f/livis-hope-to-end-ahc.

The night was organized by Livi’s paternal grandparents, Cathy and Larry Hallin of Alton Bay, in collaboration with John McArthur of the NH Music Collective and Yum Yum Shop, where McArthur runs a monthly open mic for children.

The cost of the event was underwritten by an anonymous donor, so all proceeds from ticket sales will go toward a key short-term goal: providing Livi with a therapy dog from Gilford’s Golden Guardians. The pup, due to be born in several weeks, will be trained by the organization and Brian Roy, and in addition to calming Livi, the animal would also offer warnings about various triggers and provide her with security and independence.

The cost of purchasing and training the dog is $15,500.

“We can train the service dog to provide Livi with an alert before an attack and provide support, comfort and a calming environment when she’s going through an episode and assist her physically when she’s unable to move, retrieve things or walk steadily,” Brian said.

The Roys’ long-term fundraising goal is to ensure they will be able to afford gene therapy for Livi when one of three treatments now in the research and testing phase is available. “In the rare disease community, you don’t have a dollar value given to you. You don’t know what’s going to be needed, but we want to be ready. It’s been a huge relief this year to hear how well gene therapy research is going,”

Also important to the couple is the need to spread awareness because so many children with AHC are improperly misdiagnosed with epilepsy — or other conditions — and placed on the wrong medications.

To provide much-needed information about the condition, the couple has launched a new website, hope4livi.com, which tells Livi’s story, offers information and resources about AHC, and links to sites sponsored by other affected families.

Protecting Livi

The Roys recognize an episode in their beloved toddler almost instantly.

Livi’s mood shifts dramatically, and she stops making eye contact. Her eyes move erratically, and her limbs can become sluggish or go limp all together. Essentially, Livi’s body battery drains on her without warning, typically after energetic play, an unfamiliar scenario, an illness or overstimulation.

Her parents say they must be vigilant about outside visitors and have even reduced the number of sessions Livi has outside the home for physical, occupational and speech therapy. They worry about every decision: Is Livi getting enough socialization? Is it too much? Is it going to trigger an attack?

“We want to give her the best quality of life, and struggle with what are the right decisions,” Christy said.

In the early months following the diagnosis, Livi could go several weeks without an attack, and Brian says now with her new ketogenic diet — high in fat and low in carbs — Livi experiences fewer fluctuations in blood sugar. It’s helping her cognitively, and she has more energy, so months can pass without an occurrence.

With more energy comes more strength and endurance. Livi is interested in learning how to walk and, recently, she stood on her own for a few moments. Her vocabulary is growing. The tentative child has even been willing to get in the bathtub with her mother.

“I used to be an extreme planner,” Christy said. “Now, I wake up, and I don’t have a plan. I just want Livi and I to have a good day together.”

When Livi was diagnosed, Christy worked full time as the executive director at Forestview Manor in Meredith. Brian left his job and stayed home with Livi for a time, and then the two parents switched roles.

Brian is now working as a project engineer at STS Aerospace in Laconia, and Christy is home with Livi, which Christy prefers.

They continue to learn about AHC, network with other AHC families and advocate for Livi, and they are learning what it means to take care of themselves.

“Part of the difficulty associated with this disorder is it’s very hands-on, and it requires a lot of attention. It really does require the two of us to work together,” Brian said. “When we are able to have a date night, or get someone to watch Livi while she’s sleeping, we try to make the best of the moments that we can.”

As Livi’s website says, “She reminds us daily that we need to enjoy each little moment and now we see these moments as worth so much more.”

To learn more about AHC, visit ahckids.org/education/whatisahc.