How 5-year-old's battle with rare epilepsy has enriched Monroe family

Ryan Loren, The Monroe News
·6 min read
Elliott Althouse, of Monroe, who turns 5 years old today, sits in his home surrounded by the items he brought back from his family's recent trip to Walt Disney World which was provided by the Make-A-Wish Foundation. Elliott is dealing with a very rare syndrome called Lennox-Gastaut Syndrome, a lifelong and aggressive form of epilepsy.
Elliott Althouse, of Monroe, who turns 5 years old today, sits in his home surrounded by the items he brought back from his family's recent trip to Walt Disney World which was provided by the Make-A-Wish Foundation. Elliott is dealing with a very rare syndrome called Lennox-Gastaut Syndrome, a lifelong and aggressive form of epilepsy.

Elliott Althouse is a bundle of brilliant energy.

Like many 5-year-olds, he loves superheroes, sword fights and animals, especially his two dogs, Maui and Leia, and his cat, Lottie. He loves spending time with family and being outdoors. His favorite Disney movies are "Moana" and "Frozen." And nothing gets him more excited than Halloween and Christmas.

But Elliott is also very unlike most 5-year-olds.

From the age of 2, Elliott has battled a lifelong and degenerative form of epilepsy known as Lennox-Gastaut Syndrome (LGS). In honor of Epilepsy Awareness Month this November, Elliott's family is hoping to raise awareness of the life-threatening disease.

Elliott's mother, Amanda, recently was named an ambassador for The LGS Foundation, which celebrated the 15-year anniversary of its founding earlier this month.

"We had never heard of this syndrome before this. It's one of those things that you don't hear about unless it affects you directly," said Amanda. "It's so easy to feel like you're on an island when you receive a diagnosis like that. I want people to be aware of LGS and support families going through it so nobody ever feels like they're by themselves."

Elliott Althouse, of Monroe, who turns 5 years old today, wears a PJ Masks t-shirt that says, 'How to spot a HERO.' Since he was 2 years old, Elliott has battled a very rare syndrome called Lennox-Gastaut Syndrome, a lifelong and aggressive form of epilepsy.
Elliott Althouse, of Monroe, who turns 5 years old today, wears a PJ Masks t-shirt that says, 'How to spot a HERO.' Since he was 2 years old, Elliott has battled a very rare syndrome called Lennox-Gastaut Syndrome, a lifelong and aggressive form of epilepsy.

Elliott's syndrome is a rare one.

It's estimated about 1 million people in the world are afflicted with LGS. That's between 1-2% of all epilepsy cases. It is a severe form of the disease that develops in childhood and often leads to lifelong disability. It typically triggers developmental delays and exacerbates other conditions.

In Elliot's case, he also battles asthma, autism and ADHD while common colds and the flu often turn into harrowing experiences.

There is currently no cure for LGS. Even with treatment, the vast majority of children continue to have seizures and intellectual disabilities into adulthood. Many with LGS can live into their 50s or 60s, but are more likely to die prematurely due to the underlying brain disorder, seizures, injuries, accidents, aspiration pneumonia, or Sudden Unexpected Death in Epilepsy (SUDEP).

"It changes your perspective," said Amanda. "You have your goals and expectations of what things will be like, but sometimes life doesn't go that direction. We've learned to take it day-by-day and sometimes it's even moment-by-moment. You learn to be really super grateful for the smallest things. And him being healthy and safe and here is the top thing."

Elliott Althouse, of Monroe, who turns 5 years old today, wears his chef hat while playing with a new food cart his parents bought that resembles the carts at the Walt Disney World resorts. The family recently returned from their Make-A-Wish trip to Florida in the final week of October. Elliott is dealing with a very rare syndrome called Lennox-Gastaut Syndrome, a lifelong and aggressive form of epilepsy.

Amanda's background in education helped her recognize the early warning signs. When Elliott was 2 years old, he experienced his first atonic, or drop, seizure when his head fell suddenly at the dinner table. Two weeks later, Elliott had his first absent seizure, a catatonic staring spell that stopped him in his tracks.

The seizures were fleeting and infrequent, but doctors listened to the family's concerns and referred them to a neurologist. They never made it to the appointment. As the frequency and intensity of Elliott's seizures increased, the family instead rushed to the emergency room.

They remained in the hospital for over two weeks.

"He was pretty much seizing around the clock," said Amanda. "I'll never forget it. They brought us down to the neurologist's office to see the video footage (of the EEG) and there were no times at that point where his brain was resting. It was constant seizures."

Elliott Althouse, of Monroe, who turns 5 years old today, hugs the Grinch toy he brought home from the family's Make-A-Wish vacation in Walt Disney World. The theme for his birthday party is the Grinch. Elliott is dealing with a very rare syndrome called Lennox-Gastaut Syndrome, a lifelong and aggressive form of epilepsy.
Elliott Althouse, of Monroe, who turns 5 years old today, hugs the Grinch toy he brought home from the family's Make-A-Wish vacation in Walt Disney World. The theme for his birthday party is the Grinch. Elliott is dealing with a very rare syndrome called Lennox-Gastaut Syndrome, a lifelong and aggressive form of epilepsy.

Early detection of LGS is important. The longer the condition goes uncontrolled the worse it grows over time. Standard epilepsy medications and treatment can have little effect on people with LGS who are prone to a wider and more aggressive range of seizures. In addition to atonic and absence seizures, Elliott also developed tonic, myoclonic, and tonic-clonic seizures.

Elliott failed multiple medications before doctors found the right mix. Together with regular checkups and daily breathing treatments, Elliot's quality of life has improved dramatically. He is down from hundreds of seizures each week to just a handful every day.

He has started school through a special education program and is constantly learning new skills – a major milestone for children suffering from LGS.

"LGS is really a spectrum," said Amanda. "A lot of kids with LGS are not able to walk or feed themselves or talk, but that's not everybody. We've been told that the better the seizures are under control, the better it will be. We've seen that. He has the best control he's ever had, he's learning new things, he's putting things together that we've never seen before."

Elliott Althouse, of Monroe, who turns 5 years old today, dances to the song "You're a Mean One, Mr. Grinch," with his stuffed Christmas Grinch. Elliott will have a Grinch-themed birthday party. His family is raising awareness for Elliott's condition during November's Epilepsy Awareness Month.
Elliott Althouse, of Monroe, who turns 5 years old today, dances to the song "You're a Mean One, Mr. Grinch," with his stuffed Christmas Grinch. Elliott will have a Grinch-themed birthday party. His family is raising awareness for Elliott's condition during November's Epilepsy Awareness Month.

The support of the Monroe community has made a huge difference in Elliott's life.

The significant financial burden has been eased by community fundraisers, including GoFundMe campaigns, the Erie 5K Race for the Kids, and Cakes by Stephanie, which holds an annual SUDEP awareness day in honor of Kennedy Mayes who died from complications in 2018. Those donations helped Elliott's family get their dog, Maui, who is being trained to help recognize and alert Amanda and her husband, Bryce, to oncoming seizures.

Next year, Elliott will undergo vagus nerve stimulation therapy which will provide an implant that sends regular electrical impulses to the brain to help prevent or lessen the severity of his seizures.

"We're super grateful for the help that we have received," said Amanda. "The people in your life are so important. All the help we've gotten has really helped bring awareness and allowed us to help other families who have felt like we did at first, which was completely alone. But we don't feel that way anymore. We have a lot of people that support us and we're very fortunate."

Elliott Althouse, of Monroe, who turns 5 years old today, met two of his favorite characters, Disney princesses Anna and Elsa from Frozen, during the family's recent trip to Walt Disney World which was provided by the Make-A-Wish Foundation. Elliott is dealing with a very rare syndrome called Lennox-Gastaut Syndrome, a lifelong and aggressive form of epilepsy.

The family recently returned from a life-changing experience at Walt Disney World and Universal Studios thanks to the Make-A-Wish Foundation. They stayed at Give Kids the World Village, a nonprofit resort that provides weeklong, cost-free vacations to children with life-threatening illnesses.

Elliott met all of his favorite characters, including Elsa and Anna, Donald and Daisy Duck, Moana, Cookie Monster, and the Grinch. The family went to Magic Kingdom, Animal Kingdom, Epcot, Hollywood Studios, Universal, and Islands of Adventure and returned to their home in Monroe laden with souvenirs.

Elliott also celebrated both Halloween and Christmas during his stay along with a birthday party. His birthday is Nov. 19 — this year's theme is "The Grinch."

Elliott Althouse, of Monroe, who turns 5 years old today, met Halloween Mickey Mouse at Walt Disney World during his family's recent Make-A-Wish trip to Florida. "It was actually cool and rare to see his Hong Kong Halloween outfit," said Amanda Althouse, Elliott's mother. Elliott is dealing with a very rare syndrome called Lennox-Gastaut Syndrome, a lifelong and aggressive form of epilepsy.

The experience was as welcoming as it was magical, said Bryce.

"It was nice to be somewhere where everybody understands," he said. "Like, if we take Elliott out to a restaurant and he starts being a little loud, a little wild, not everybody understands that there's things going on. But everybody there understood all of our kids are going through different challenges. It was a special place full of special kids and we all understood that there was something unique about all of us.

"That unspoken bond was huge."

Despite all the hardship, Bryce said that their experiences with LGS have been transformative and continue to be a source of motivation and boundless love.

"Elliott is so cool in how he handles everything," said Bryce. "He's still a 5-year-old and we still deal with that very fun part of parenting, but through all the things that we do with him and all the stuff he has to deal with and the understanding he's starting to get, he still holds on to giggling every day, always finding a way to still be happy. That little piece of him is something I hope he never loses and something I am so jealous of."

Elliott Althouse, of Monroe, who turns 5 years old today, is embraced by his parents Amanda and Bryce Althouse at the Magic Kingdom at Walt Disney World. The family recently traveled to Florida thanks to the Make-A-Wish Foundation. Elliott is dealing with a very rare syndrome called Lennox-Gastaut Syndrome, a lifelong and aggressive form of epilepsy.

— Contact reporter Ryan Loren at RLoren@monroenews.com.

This article originally appeared on The Monroe News: How 5-year-old's battle with rare epilepsy has enriched Monroe family