Andrew Scott’s 14-year-old daughter Hayleigh fell ill three weeks ago while away at camp.

She’s in Boston Children’s Hospital’s Intensive Care Unit hooked to a machine keeping her alive, and she’s surrounded by well wishes and cards.

She’s in acute respiratory distress.

But there are only good days for Andrew Scott.

“Her strength is just connecting with people,” Scott said, brushing strands of blond hair away from Hayleigh’s face. She awoke to her father’s touch, and he showed her a photo of her new baby brother, Isaiah, born just days before.

Her eyes widened at the image, and she gasped through a breathing tube in her mouth.

Hayleigh was born with a hole in her diaphragm, and underwent surgery as an infant to repair and rearrange her organs. In fragile health, she was put on an extracorporeal membrane oxygenation machine. The machine saved her life, but it damaged her hearing and caused her to develop a mild lung-affecting condition called pulmonary hypertension, Scott said.

Now, after contracting a cough while on a school field trip at Baxter State Park in Maine, Hayleigh is back in the hospital.

“We’re getting through this because of our faith in Jesus Christ, and just seeing how many things, just all these, all of these amazing things,” Scott said. “There’s a whole lot of coincidences that are going around right now – it’s in the valleys of something like this that sometimes you get a lot of perspective.”

After being treated at a hospital in Bangor, Maine, Hayleigh was flown to Boston Children’s, where she was again put on the ECMO machine to combat her worsening condition, Scott said.

Although it’s unclear how long Hayleigh will remain in the hospital, she is no longer on the machine and her health is improving, Scott said.

“She’s still heavily sedated, but making slow, steady progress back toward health,” he said. “She’s still critical, but she’s making progress.”

Scott stays with Hayleigh while her mother, Rachel, takes care of Hayleigh’s sisters, Sarah and Vienna, her brother A.J. and baby Isaiah at the family’s home in Hollis.

He describes Hayleigh’s progression in an online blog titled “The Journey,” which was originally reserved for documenting the family’s mission trip to Africa earlier this year. The trip had a profound effect on Hayleigh, Scott said.

“The reason we went on this big trip, I just really wanted the girls to have a broader perspective of this life,” he said. “American culture focuses a lot on things that are totally irrelevant. There’s tremendous pressures; they have to keep up online profiles like on Facebook, and they’re essentially their own PR agents.

“But they’re teenagers that are trying to figure out who they are. I just wanted them to know that that’s not life.”

The trip inspired the family to raise money for the Sole to Soul organization as part of Missions of Hope, which works to give shoes to kids living in less fortunate areas of Kenya.

After going door to door and creating a video describing their intentions, the Scott girls raised more than $30,000 for the organization, and 1,200 children received shoes, according to Scott’s blog.

Shortly after the children received their shoes, an arsonist set fire to a school there, destroying more than 100 pairs, Scott said. His daughters were devastated.

The blog has allowed Scott to stay connected with many individuals his family met on the trip and has become a vehicle for posting updates on Hayleigh’s condition, along with a “Hayleigh’s Helpers” Facebook page, he said.

“Here we are here, and now there’s this world of prayer coming down on Hayleigh,” he said. “I just wanted to say, ‘Here’s what we know, here’s how it started,’ and the notes just kind of started coming from all over the world.”

Despite her recent illness, Hayleigh’s fundraising efforts for Sole to Soul haven’t stopped. One family in the community has been inspired to raise money for the organization in Hayleigh’s honor.

“People talk about, ‘Somebody needs to do something,’ but when you actually realize it’s you that can do something and you need to do it, that’s when things start happening,” said Hannah Simard, who visited Nashua fire stations with her family to raise money for Sole to Soul.

“We clicked on the website for the shoes and we realized that this was something that needed to be done and that we could do something about it.”

On Oct. 15, Karin Simard and four of her children –
Hannah, 16, Nathaniel, 13, Noah, 12, and Joshua, 9 – began visiting all six Nashua fire stations to sell homemade apple crisp to raise money for Sole to Soul.

The family, which has never met Hayleigh, learned of her fundraising efforts through Facebook and Scott’s blog, Simard said.

“We met Hayleigh on Facebook,” Karin Simard said. “A friend of ours posted on her Facebook page, and when we clicked on it, it just really touched us how young she was and how much she’d done for the community, and we wanted to help her and let her know we cared, too.”

The family made 35 tins of apple crisp daily until Sunday, Oct. 20, and visited each fire station every day at lunch or dinnertime to give every crew member an opportunity to buy apple crisp.

“I think that just for the kids to be able to see this is huge,” Karin Simard said. “And I can just only imagine a tiny bit of what Hayleigh must feel like, you know. She does this good all the time.”

As of Oct. 18, the family had raised more than $460 for Sole to Soul. The family hopes to inspire others to raise money for the cause, Karin Simard said.

“Each and every single station has been generous in its own way,” Karin Simard said. “We far exceeded what we set out to do.”

In the ICU, a cellphone on Hayleigh’s pillow played popular songs by One Direction and Taylor Swift as Scott discussed his daughter’s slow, but steady, progress toward good health.

“She likes Taylor Swift,” he said. “She’s just a 14-year-old girl.”

Although the ECMO machine saved Hayleigh’s life as a baby, drugs used in the process damaged her hearing, Scott said. But she has since established a business called Hayleigh’s Cherished Charms (www.hayleighscherished
charms.com), for which she and her siblings create and sell handcrafted charms and hearing-aid accessories online.

Hayleigh wore her own “tube twists” as she rested in the hospital.

Even with the uncertainties and complications that illness often brings, Scott said Hayleigh’s spirit for helping others, coupled with his family’s faith, gives him comfort. In a way, Scott said, Hayleigh’s experience at the hospital is just another part of an adventure that is “The Journey.”

“I know her, and I know that she more than anything would just be so pleased if she wakes up and she leaves this hospital, and as a result, Missions of Hope has X amount raised,” he said. “She was really bothered that 100 kids needed shoes, so that would be a big joy to her. I know it would.”

For more information about Hayleigh, her family and the Sole to Soul organization, visit Scott’s blog at www.tsfga.blogspot.com.

Emily Hoyt can be reached at 594-6402 or ehoyt@nashuatelegraph.com.