GRANTHAM — The Leisters’ home is equipped with supplies and written schedules to ensure their 5-year-old daughter, Charley, receives the medical care she needs on a daily basis.
But the structural elements of the house fall short in accommodating her.
Each day, the Leister family, with assistance from nurses, navigates a lengthy morning and night routine for Charley, who was diagnosed with Aicardi syndrome, a rare neurological condition that affects her eyesight, motor function and frequency of seizures, necessitating full-time care.
“It’s not sad,” Charley’s mom, Taylor Leister, said of their life with Charley. “It’s very joyful.”
But there are still ways the house can be better adapted to their routine, which currently involves bathing Charley in the kitchen sink because the shower isn’t suitable, and carrying her to areas her wheelchair can’t access.
The Leisters purchased their Grantham home about six months before Charley was born, and encounter obstacles caring for her in that space as she grows.
“We don’t really have family in the area,” said Mike Leister, Charley’s dad. “It took a long time to meet a lot of our neighbors.”
But now, the community has gotten to know Charley and is raising money to make her house more accessible, with a $250,000 fundraising goal and a party on Saturday.
Expense is one of several barriers associated with reconstructing a home to accommodate a family member with special needs, said Special Needs Support Center Executive Director Kendra LaRoche, but it remains an essential step in their care.
“We’re not talking about luxury renovations,” said LaRoche. “We’re talking about whether a child can get into their own home, use the bathroom safely, sit at the dinner table with their family or move independently between rooms.”
A lengthy routine
On Wednesday morning, the Valley News visited the Leisters as they got ready for the day. Wednesdays are a bit different for Charley: instead of going to kindergarten at Grantham Village School, she heads down to Concord for outpatient occupational therapy, physical therapy and speech-language pathology.
Charley’s nurse, Kerry Freitas, arrives around 7:30 a.m. from Hopkinton and accompanies her to therapy or school, depending on the day. Taylor works as a nurse in the birthing pavilion at Dartmouth Hitchcock Medical Center, and Mike is a graphic designer based in Hanover.
On Wednesday around 8 a.m., Charley wore a vibrating vest because she has trouble clearing her airway. She uses it twice a day when she’s healthy, at breakfast and dinner time, and four times a day if she’s sick, as she is susceptible to respiratory illness.
Charley eats breakfast before taking medications, which is an extensive part of the routine, as they’re administered via a gastrostomy tube — a medical device placed through the skin directly into the stomach. Then, Charley’s parent or nurse helps her get dressed, brush her teeth and brush her hair.
The school bus picks her up using a chair lift, and she arrives in the late morning.
Charley attends school with her brother, Beckett, who’s in second grade and helps take care of her, he said on Wednesday.
The morning and night routine takes about 2 1/2 to three hours every day, outpacing the typical time it takes a family of four to get ready.
“There’s a lot more steps,” said Mike.
Certain physical obstacles make it even more challenging.
With Charley growing fast, carrying her up and down the stairs is not ideal, said Taylor, especially now that she’s 42 pounds, which is above the recommended limit for lifting a patient.
“It’ll cut down on the time it takes,” Taylor said of moving Charley’s bedroom to the ground floor in the future. “But it’s also very unsafe right now.”
Inside the home
At their home in a neighborhood off Anderson Pond Road, Charley currently shares a bedroom with Beckett in the furnished basement. Her bed, adjacent to his, is difficult to access, as it sits along a wall next to the door. Bringing Charley up to the ground floor and back to her room involves lifting her from her wheelchair and carrying her down the stairs.
In her bedroom, Charley takes multiple naps per night instead of sleeping all the way through. The room is equipped with a monitor, a pulse oximeter that tracks her heart rate and oxygen levels, and an oxygen concentrator.
Quickly accessing her crib-like bed with wooden rails around it can be challenging, as the small gate door can only partially open before it hits Beckett’s bunk bed.
“The gate doesn’t open all the way, so it’s hard to get in there,” said Mike.
While it accommodates her current wheelchair, the front door and front entryway are narrow and won’t be suitable for much longer. Charley will outgrow the current wheelchair in about a year and a half — at which point she’ll need a full-power chair, and the Leisters will need a larger van.
“One thing we’ve learned through all this is we’re not just doing things for right now. We have to think ahead,” said Mike.
The basement bathroom has a walk-in shower but no bath. As a result, the Leisters must repurpose their kitchen sink to bathe Charley.
The Leisters have been trying to build a new bedroom and bathroom for Charley since 2024, but delays and unreliable contractors have cost them tens of thousands of dollars, they said.
“That wasn’t even money that we had in the first place,” said Taylor, who added that they took out a home equity loan.
Once finished, the bedroom will include its own bathroom with a shower and sink that Charley can access from her wheelchair, plus a bath. Grantham-based Sugar River Kitchen and Bath has taken on the bathroom project, and the progress is ongoing.
The bedroom will also feature a hospital bed that’s easier to access and a mattress that raises and lowers. This partially remodeled room is on the home’s ground floor. They’re also hoping to upgrade their porch and its wheelchair ramp.
Construction roadblocks have slowed progress.
The Leisters have had many contractors come and look at the space to consider the project. Some of them never came back, others asked for a large fee, and a few even ran off with a deposit, Mike said Wednesday. He added that one person volunteered to do the project for free, but after tearing everything out of the room in May of 2025, never returned.
“Maybe some not really kind people can sort of feel our desperation of how bad we need this and have really taken advantage of that unfortunately,” said Taylor.
Efforts for Charley
Despite a few bad experiences, the Leisters have made strides in accommodating Charley with the help of the community, including volunteers doing some of the home projects.
Charley attends kindergarten in an integrated classroom, where a nurse sits with her at school. Her seizures can be life-threatening, so having someone there to support her ensures she’s safe outside the home.
“It’s great for her,” said Mike. “She loves being around kids her age, but it also seems to be really good for her classmates.”
When Charley started school, the pre-K playground was not accessible.
It was rebuilt in 2024 with hard-packed wood chips her wheelchair can roll over, an accessible play structure and a fence opening wide enough for a friend to walk beside Charley as they enter.
Freitas added that a preschooler with special needs who recently started at Grantham Village can also take advantage of the inclusive playground.
“Now, that little girl hasn’t had to overcome sort of the same barriers that [Charley] has,” said Freitas. “She’s got the fully accessible playground, and it’s been good.”
To help communicate with her friends and family, Charley, who’s nonverbal, has an eye-gaze tablet that displays buttons with images, phrases, words and letters. A camera on the device tracks her eye movements. If her eyes fixate on one button long enough, the device speaks on her behalf.
“We always knew she could understand what we were saying, but we never knew how much,” said Freitas.
Charley will let her family know what she needs — whether she’s hungry or needs to use the bathroom. She often asks to listen to a story, and tends to complain about getting her face wiped or her hair brushed.
“When we went to the library, she had a prompt in there to turn the page. So she would say all the time, ‘Turn the page,’ ‘turn the page,’ ‘turn the page,'” said Freitas.
Mike said the device showed them that, mood-wise, Charley is just like any other 5 1/2-year-old, with a spicy personality that’s much more obvious now that she can tell them what she’s thinking.
Barriers in funding
To find the financial resources to make Charley’s life easier, the Leisters have had to do a lot of digging.
LaRoche noted that accessibility funding is often scattered across different state programs, each with its own eligibility requirements, income limits, application processes and coverage restrictions.
“The challenge isn’t always that funding doesn’t exist. It’s that the funding available doesn’t necessarily match the needs of the family,” said LaRoche.
Taylor shared that they started planning Charley’s bedroom when she was only 1 year old, but funding through state programs has been delayed.
“We’ve been trying to move forward with trying to find some state funding, trying to find different programs for four years, and it didn’t pan out,” said Taylor.
Amid a long period of sitting on waitlists, the Leisters are now out of time and on the hook to cover the cost themselves somehow. After years of trying to organize everything on their own, some friends and neighbors stepped in and offered to help by creating the Charley’s Courage fundraising event.
The fundraiser aims to raise money to make Charley’s life easier and safer. There will be a dance party and silent auction Saturday evening at Forbes Tavern, 6 Club House Lane in Grantham. A $35 ticket includes a drink and appetizers.
Granite State Independent Living, based in Concord, helps families across the state navigate resources that can provide quality living and independence for those with disabilities.
The nonprofit partners with other agencies to provide assistance, then encourages self-direction, said Irene Hassard, independent living services manager. The objective is to give people a sense that someone is in their corner, and point them toward the tools they need.
“We need to have that mentality of ‘It takes a village,'” Hassard said.
State funding comes with roadblocks, particularly the timeline for receiving assistance, coupled with a sense of urgency. State agencies can also experience turnover, and families may start from scratch with new case managers, according to Hassard.
When requests are denied by the state, Granite State Independent Living asks for a reason in writing. Then the organization’s funding committee determines the least expensive option to remove that barrier. Hassard encourages families in New Hampshire to reach out for guidance in finding disability support.
Finding community
In the U.S., there are approximately 1,000 cases of Aicardi syndrome, which mostly affects girls. While it varies based on the severity of seizures and other organ system involvement, the median survival from birth is more than 30 years, and the chances of survival increase as individuals age.
The Leisters have attended two Aicardi Syndrome Family Conferences, most recently in Tennessee last year.
While the life expectancy for Charley’s condition can be short, with the highest risk period in the first few years and adolescence, the Leisters met families with girls in their 20s and early 30s who have Aicardi syndrome, and Mike said their parents’ advice has been incredibly valuable as Charley grows up.
“It’s really nice to just be in a room with a whole bunch of people who get it, and you don’t have to explain the whole thing to them,” he said.
The Leisters are also grateful for the medical care Charley receives, from a neurologist in Boston who did Charley’s brain surgery in 2024 and keeps up to date on the latest information about Aicardi syndrome, to her local primary care physician.
But in many ways, they don’t need to look far to provide her care. At home, the Leisters have medical equipment and multiple trained medical professionals who care for Charley, including Taylor, a trained nurse.
Taylor originally taught elementary school, but the schedule was not flexible or conducive to their lifestyle. Nursing felt like the clear path for her, especially as they struggled to find home care while so many healthcare professionals worked at Dartmouth Hitchcock.
“It just seemed like the whole universe was kind of pushing me in this direction,” said Taylor.
With Taylor’s education and practical experience, the Leisters feel like they can bring Charley anywhere, including camping in remote areas.
It’s been a good year for Charley, said Mike, with fewer hospitalizations than last year. Charley has also been playing with sensory toys, including colored macaroni on Wednesday morning. She wasn’t always able to pick things up and put them down, but now it’s her new favorite activity, said Freitas.
Mike hopes the fundraiser will be Charley’s legacy, and that the community will continue to help families of children with special needs access equipment and home renovations, using the connections they have already made.
Despite the extra effort needed to care for Charley, the Leisters are grateful for their family of four and the loved ones who have supported them throughout Charley’s journey.
“I would look at people in the situation and almost kind of feel bad,” said Taylor of a time before Charley. “But no, there’s none of that. It’s overall very joyful, and it’s a gift.”
