Darien family raising money to get teen adapted van
Thirteen-year-old Charlotte Butler loves to move.
Whether it’s horseback riding, amusement park rides, water skiing, swinging on a swing in her backyard, or even going over a big hump in the road while in the back seat of a car — Charlotte, who lives in Darien, enjoys going fast.
“She loves being outside and she loves to go fast,” said Charlotte’s mother Arlene. “She’s an adrenaline junkie.”
Two ways Charlotte will get to go faster, as well as have more autonomy, is with a power wheelchair and an adapted van.
Charlotte, who is going into seventh grade at Middlesex Middle School, has epilepsy and cerebral palsy. She can’t walk or sit on her own and is dependent on a wheelchair to get around.
Arlene, a nurse practitioner at Stamford Hospital, and Charlotte’s father Curt — who works in finance, have ordered Charlotte the new wheelchair. Over time, she will be able to operate the wheelchair by herself, using head switches.
However, the Butler’s current minivan won’t be able to accommodate Charlotte’s new wheelchair, so they need to purchase an adapted van.
They’re currently applying to foundations that will help children with special needs. These foundations “often like to see that we have made an effort to raise funds on our own,” Curt said.
The Butler family has therefore set up a GoFundMe campaign at gofundme.com/f/help-charlotte-buy-a-wheelchair-van to raise money for an adapted van. In 14 days, the GoFundMe has raised more than $18,000 by 120 people, with a goal of $56,000.
Need for an adapted van
Currently, the Butlers and their caregiver have to lift Charlotte into her car seat and then lift her wheelchair into the back of the van every time Charlotte leaves the house. They have been getting her in and of the van for several years.
With Charlotte now 13 and her chair weighing more than 100 pounds, this task is becoming backbreaking for all involved. “We've reached the point where Charlotte is getting too big for the valet seat and it’s getting very hard to load and unload her chair,” Curt said.
An adapted van includes a built-in ramp, which allows the seated person to roll in and out without any assistance, and sit inside the van while in their wheelchair.
“Development, growth and progress”
“For her first two years of her life, Charlotte was struggling just to stay healthy,” Curt said. “She has a lot of food allergies and gastrointestinal issues and was hospitalized frequently.”
However, recently, “she has been so wonderfully healthy, growing beautifully,” Arlene said. “Her time and energy are freed up from just staying healthy and are now put toward development and growth and progress.”
While Charlotte’s parents have always pureed all her food, she is now advancing to solid foods and is chewing better. She now enjoys eating her favorite foods, which are almond butter and jelly, egg salad, vanilla ice cream, and meatloaf.
“A very social kid”
Aside from her physical issues, Charlotte is a typical teenage girl, according to her mother.
She is “a very social kid,” Arlene said. “She loves being with all kinds of kids.”
She enjoys going to the mall and likes to shop for clothes. She’s a big fan of movies, especially Disney movies such as Frozen and Aladdin.
She loves music videos and listening to Taylor Swift, Justin Timberlake, Katy Perry, and Beyonce.
When asked about moving to a new wheelchair and an adapted van, Charlotte responded, “I think it's cool and exciting.”
Charlotte’s 10-year-old sister Claire said she’s “really excited for Charlotte, and I know how happy my parents will be.”
“This entire experience has been humbling and gratifying for us, to recognize the generosity of our friends and neighbors,” Curt said. “It’s so touching and moving that all these people around us are so willing to step up and support us. They love Charlotte so much.”
Nonprofits that have helped Charlotte
There are many nonprofit organizations Charlotte participates in that have highly improved the quality of her life, according to Curt.
STRIDE Adaptive Sports
Leaps of Faith Adaptive Skiers
The Challenger Division of Darien Little League
Double H Ranch camp