Community joins to renovate home of chronically ill toddler

  • Mike and Megan Coe stand in front of their newly renovated Webster home with their daughter Charlotte, 2, and son, Alex. Charlotte was diagnosed with cystinosis, a rare genetic disease, at 6 months old. LEAH WILLINGHAM / Monitor staff

  • Mike Coe reaches for his daughter Charlotte’s hand to help her over the threshold of their newly renovated home in Webster.  LEAH WILLINGHAM/ Monitor staff

  • Key members of the “Charlotte’s Village” renovation team stand in front of Mike and Megan Coe’s hone.  LEAH WILLINGHAM/ Monitor staff

Monitor staff
Published: 10/7/2017 11:57:35 PM

Two-year-old Charlotte Coe sat patiently while her father poured a glass full of PediaSure into a feeding tube attached to her stomach.

Tegan McKim, 9 – the daughter of a family friend – sat next to the pair, holding up two Barbie dolls and a small, brown horse for Charlotte to see.

“Are you excited to ride your horse today?” she asked Charlotte, handing her a doll.

Charlotte nodded, her fiery red curls bouncing from side to side. “Put on your horsey shoes,” Tegan said, referencing the 2-inch pink riding boots on the doll’s feet.

Charlotte, who lives in Webster with her family, was diagnosed with cystinosis when she was just six months old. Cystinosis is an extremely rare genetic disorder, affecting about 2,000 people in the world. It causes Charlotte’s amino acids to crystallize within tissues, leading to dangerous complications in her organs and central nervous system.

Charlotte has to take medicine almost every hour of the day and get regular feedings from a tube attached to a “button” in her stomach.

Although learning of Charlotte’s condition was overwhelming at first, her dad, Mike, said the family has adjusted to make taking care of her their “new normal.”

“It just makes you unique,” Teagan said, smiling at her friend.

The Coe family’s ability to rise up to these challenges was helped in large part by a group of volunteers who transformed their home last month.

The renovation project was led by Charles Wood of Colonial Builders, and Mike and Megan’s friend from high school, Rebecca McKim.

McKim knew the Coe family needed work done on their home, so she put them in touch with Wood, a friend of her husband. Wood visited the family to take a tour of the house and put together a price estimate for repairs.

“He came back a week later with the estimate, and it said the cost would be zero dollars,” Megan said.

Wood said he didn’t plan to volunteer the services, but when he met the Coes, he knew he wanted to help – no matter the cost.

“It was one of those moments on the ride home of just, ‘I’ve got to do something,’ ” Wood said. “I’ve worked very hard to get where I’m at, and I’m at a spot now where I can do something to help somebody – not just send a dollar off to some no-name charity.”

McKim helped Wood by starting a GoFundMe page for “Charlotte’s Village.” The team was ultimately able to pull together 70 financial donors, 30 building volunteers and a crew of volunteers to cook breakfast and lunch at the worksite.

Wood surprised the Coes with a donated stay at a home in Newbury while work was being completed. During that time, a building team installed a new roof, siding, an awning, lighting and a complete new kitchen, bathroom and plumbing system.

Work on the house started Sept. 1, and was finished in about two weeks. The Coes were brought back to their home on Sept. 17, blindfolded and excited.

“It was more than we could have even began to hope for,” Megan said.

When the Coes bought the house a couple of years ago, they intended to work on it themselves.

“We knew it was a fixer-upper,” Mike said. “What we didn’t know was what life was going to throw at us.”

Charlotte was diagnosed with cystinosis when she was less than a year old.

“There’s not really words to describe it. It kind of flips the world upside down,” Mike said. “You have expectations for how things are going to go, you have plans for your future. And something like this kind of just, for a moment, really flips that on its axis.”

But they adapted to give Charlotte what she needs: Megan decided to stay home full-time to take care for her daughter. Charlotte takes seven kinds of medications, three times a day. Her condition makes it so she has a hard time swallowing, so her parents supplement with tube feedings four to five times a day.

A symptom of cystinosis is organ failure. Although medications slow the progression, they don’t stop failure completely. At some point, Charlotte’s parents know their daughter will need a kidney transplant.

“The uncertainty is the scariest part,” Megan said.

But now that everything is fixed with their home, Mike said, he and Megan can focus on taking care of Charlotte.

“They’re living in a house that’s safe and so they don’t have to worry about anything except themselves and the kids,” Wood said.

Watching Charlotte run around her newly renovated home, you would never guess that she is sick.

Charlotte’s parents describe her as “happy, smart and bright.” She’s just a normal 2-year-old who likes to sing and put on shows for her parents about princesses and dinosaurs, they say. She loves the Disney animated musical Frozen and Thomas the Tank Engine.

There is no cure for cystinosis yet, but modern medicine can improve and extend life expectancy of those affected by it. The Coes say they are nothing but excited for their daughter’s future.

“She’ll definitely have some challenges that are outside what other people experience,” Mike said. “But I think she’s going to live a long and happy life.”

(Leah Willingham can be reached at 369-3322, or on Twitter @LeahMWillingham.)

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