On July 29, Warren Wiebe, a 70-year-old resident of Ontario, Canada, will set out on a 24-hour journey through more than 165 miles of the Great Allegheny Passage on a bicycle.

Starting in Pittsburgh at around 10 a.m., Warren plans to bike slightly uphill away from the city for about 12 hours. He plans to turn around either at the eastern Continental Divide or sooner — based on how fatigued he is — and return to the city.

Both the time and route are optimal for his purpose, Warren said. July 29 is close to a full moon, and the Great Allegheny Passage trail is away from any road traffic.

Warren is no rookie to long distance touring, having pedaled back and forth across the continent before. But this bike ride is special.

It’s an opportunity to raise funds for research and treatment of FOXG1 syndrome and do something meaningful for his two-year-old granddaughter, Elouise, who suffers from the rare genetic disorder. Proceeds from the “24 Hours for Elouise” fundraiser will go to FOXG1 Research Foundation.

“I'm just really looking forward to this with anticipation and trepidation and just hoping to get some good done,” Warren said.

Michael and Tegan DeLibero, of Cranberry Township, suspected early on their second-born daughter, Elouise, was falling behind. They had thought it was just bad reflexes she would recover from in time.

“But then we noticed she wasn’t looking us in the eyes very much,” said Tegan.

Elouise was unable to track objects properly. When she was 10 months old, Elouise was diagnosed with the FOXG1 syndrome.

“It was quite a shocking day for us,” Tegan said.

“It was the worst year of our lives,” Michael said. “The simple way of saying it is, it’s unlikely that she’ll be able to walk, talk and feed herself.”

FOXG1 is a neurodevelopmental condition caused by genetic mutation. In addition to delayed brain development, FOXG1 is a movement disorder — simply put, Elouise does not have complete control of her movements and has to deal with involuntary motion.

“It’s just hard for her to do a lot of things, even just holding a toy or picking something up, putting it in her mouth — she can’t do continuous movements like that,” Tegan said.

FOXG1 also presents a threat as a seizure disorder. Recently, a seizure necessitated a hospital visit, Michael said. Gastrointestinal issues, visual impairment and difficulty sleeping are also nothing new for Elouise.

“I remember the early months, even before the diagnosis, we could see that there were struggles involved,” Warren said.

When it was his time to feed baby Elouise, he was among the first to notice her difficulty swallowing.

“She would choke on the milk and turn blue a couple of times. We didn’t really know why,” he recalled.

“It’s very tough in the beginning, because it changes the outlook that you envision for your child,” Michael said.

“We really had to learn unconditional love, too,” Tegan said.

While Elouise can interact and play with her parents, it’s not to the same extent as most children, she said, “and so, you’re really learning how to love her for exactly who she is.”

Medications for symptom management and physical therapy are part of Elouise’s day-to-day life and, by extension, the lives of the family. Elouise has an older sister, Mabel, who is 4 years old; and a younger brother, Boaz, who is 7 months old. Elouise’s parents and siblings also live atypical lives for children, Tegan said.

“We believe that it's taught them a lot of unique compassion and sacrificial love that they would not have learned otherwise,” Tegan said. “That’s not an easy thing to teach a child.”

In addition, according to the International FOXG1 Foundation, as a neurological disorder, the condition is “life limiting.”

“So that was a constant thing in life: Is she gonna make it?” said Michael.

“And at this point, you’re just making guesses,” Warren said.

Due to the condition’s rarity, FOXG1 is not well studied, said Michael.

The FOXG1 Research Foundation, the beneficiary of Warren’s bike ride, is paving the path toward a potential solution through gene therapy.

Michael said the organization conducts self-funded clinical research and will start a three-year human trial session this summer, having received FDA approval.

While Elouise will not be part of the trial, Michael said the most optimistic scenario is it is proven to be effective and is approved for general consumption.

“(It) shows a lot of efficacy in animal studies, but humans are their own thing,” he said. “I think it’s something that we’re watching very closely and taking a look at.”

Elouise also has a rare variety within an already rare disorder called “mosaic,” Warren said. Some of her cells are normal, which gives her more control than others affected by FOXG1. For instance, she can hold up her head or take steps with support.

“She might be capable of more than we think,” Warren said. “There may only be a handful of people exactly like her in the world.”

At the end of the day, the future remains a mystery for the family.

“It’s definitely just a blessing that she’s still here,” Michael said.

Warren has been part of Ellie’s life — only he calls her Ellie — from the day she was born.

“There’s just something about Ellie that touches hearts,” Warren said.

“I have a lot of fun with all the grandkids: playing, teaching them how to walk,” Warren said. He has a game where he puts their feet on his to do little strides. “I do that with Ellie.”

Elouise has to spend an hour each day developing her hip sockets, so she has a chance to walk without support in the future. Warren said having observed experts stop by the DeLiberos’ house to help Elouise, he tries to work what they do into his interactions with Elouise.

“It’s a different kind of grandparenthood,” he said. “But it’s challenging and rewarding.”

Warren even made checklists and spreadsheets of Elouise’s therapies to optimize the different ways the family could help her move and practice therapy.

“I also discovered that she had a similar taste in music,” Warren said.

His meditation playlist appeared to soothe Elouise and that became a shared hobby for the two.

“He’s been a coach his whole life, so he just segued right nicely into therapists,” Tegan said about her father.

Warren has also been active his whole life, from cycling to hockey and baseball.

“Now, I’m nobody’s idea of an athlete,” Warren said. “I generally refer to myself as a dachshund body with a greyhound imagination.

“And that’s what makes me think I might be able to do this.”

To prepare for the bike ride, Warren said he used artificial intelligence to create a training schedule and a nutrition guide.

“Now, of course, it started with ‘the five different medical specialists you need to consult before you even think about this,’” Warren quipped. “So I skipped over that part.”

Canada’s weather prevented him from training outdoors earlier in the year.

“Doing 10 hours on a stationary bike is a pretty mind-numbing experience,” he said. “Now that I’ve got to do more of it outdoors, it's a little more entertaining.”

Outdoors rides are more strenuous too, Warren said.

He started the training process with a four-hour ride, slowly building up by 10% each week until he was able to complete a full 10-hour ride.

“It’s sort of like a marathon,” Warren said. “Marathon trainers don’t practice doing marathons by doing marathons, because if you do the whole thing, you're toast for two months.”

By June 26, Warren said he had done a bike ride covering every time frame in a day by varying when he starts and ends the ride.

The approach has also helped him understand how his body feels physically at different times, he said.

Warren said he covers close to 400 miles every week.

The training has been going well, he said, but not always smoothly.

On one of Warren’s expeditions, a canine attack unexpectedly led to him getting bitten.

“Well, the good news was, the dog owner was very apologetic and helped get me to the hospital and also became a contributor to the ride,” Warren said. “I told him to find some more dogs.”

The bike ride is right up her father’s alley, said Tegan. Warren has biked across Canada before and the upcoming ride will not be his first time journeying for a fundraiser.

“That’s where he thrives,” said Tegan. “So I’m excited for him.”

Tegan added she is mostly a little anxious about the overnight chunk of the ride. She and her mother are working on a way to track Warren.

“We’re obviously very appreciative of it,” Michael said. “It’s a very personal relationship with Elouise and her grandfather. It's cool that he found a way to contribute in a way that's very him.”

Research on FOXG1 syndrome is expensive and primarily powered by grassroots initiatives. Michael said he hopes the ride brings awareness to Elouise’s condition and efforts to overcome it.

“I’ve just been absolutely blown away by the response from people on this,” Warren said. “I'm getting people that I haven’t talked to for three or four years that are coming forward with donations, and it’s coming from every corner, from every age. It has been absolutely amazing to me.”

“We very much just view Elouise as somebody that God cares about and somebody that society may overlook,” said Michael. “She’s not going to work. She’s not going to contribute in that way to society.”

Michael said Elouise loves to talk and be talked to and has a great laugh when she is tickled.

“I think, in general, she’s very content in life,” he said. “You can tell that she’s happy just to be hanging out with people, which is something I think we could learn a little bit from.

“As her parents, we just love her a lot. We’re glad Elouise is here in our family. Our hope is that people see Elouise as a person, and somebody who is worthwhile.”

“What Ellie has 100% of is the ability to love and to be loved, and you can see that just radiate out of her,” Warren said. “There’s no less of a person in that respect whatsoever.”