UPDATED: Can Wilton Help Make-A-Wish Grant the Wish of a Girl with a Life-Threatening Disease?

UPDATE, Mon. Sept. 15, 8 p.m.– The Zoning Board of Appeals approved the Wrights’ application to build another garage, so they can move forward on getting Ella’s wish granted. Now Make a Wish can come in and turn the family’s existing garage into a playroom so Ella can play with her friends safely!

ORIGINAL STORY–When you’re a 5-year-old in Wilton, life is carefree. The biggest worry you might have is whether you’re tall enough to ride the ferris wheel on your own at the Rotary Carnival.

Of course, that’s a generalization and far from an absolute. But it’s especially not the case for one little 5-year-old Wilton girl, Ella Wright. She’s dealing with much larger, life-threatening worries.

Ella has something called Dravet Syndrome, a rare, severe form of epilepsy that is very debilitating.  Quite often it’s linked to a higher incidence of  SUDEP (sudden unexplained death in epilepsy), according to the Dravet Foundation. “The seizures tend to be resistant to most anti-seizure drugs, and there are a variety of triggers–if she’s sick or has a fever, she’ll almost always have a seizure. Any kind of stimulation or anything that raises Ella’s body temperature, can trigger it,” explains her mom, Dana Haddox-Wright.

“She’s a very fun-loving, intelligent little girl. Everyone she passes, she says, ‘Hi,’ and engages people in conversation. She has a lot of friends in her preschool class. She likes to be very active. But with what she has it restricts what she can do–which affects her ability to socialize. But aside from that she’s a very happy little girl,” says her mom.

Because of her epilepsy, Ella is severely restricted so that she can hopefully be protected from as many seizures as possible. “If she’s playing on the playground, she could easily have a seizure within 20 minutes of playing if she overheats or gets over-excited. Sometimes it can even be less time, depending on weather or other things. We have to be very careful, and plan playdates around her nap time, and make sure the parents have air conditioning, or she has to wear a cooling vest and sun glasses. She doesn’t get to play at recess in pre-school a lot, just to keep her on the safe side.”

It’s beyond stressful for Ella’s mom and dad, Robert.

“We’re always on guard, always looking and making sure there’s no sign of a seizure. A lot of parents of children with Dravet tend to have anxiety issues and depression, and PTSD. We try to stay pretty upbeat, and keep our household happy,” Dana says.

The Make A Wish Connection

Wilton resident Deborah List is a longtime Make A Wish volunteer. She connected with Ella’s mom, Dana, on the popular Wilton 411 Facebook page.

“I friended Dana so we could exchange information about a house cleaner, and then started to learn more about Ella through her Facebook posts,” List explains. “I sent her a message and told her that I’d been a volunteer for Make a Wish for more than 20 years, and that I thought Ella would be available for a wish.”

According to List, the Wrights were hesitant to pursue it, as they felt it would “take a wish away from another child.” But she explained that Make a Wish is trying to widen its circle of grantees beyond only terminal children. Ella was immediately approved.

List was chosen as the local Make a Wish lead grant coordinator, and she was paired with Wilton resident Pam Keough, who coincidentally is the CEO of Make a Wish Connecticut (MAW staff get to volunteer on at least one wish each year). Wish granting starts with a meeting between wish coordinators and the child and the child’s family.

“It’s all about the wish child–we find out what the wish child likes, about their siblings and we get to know the families. It’s a range of what their expectations are. We spend time getting to know all about them–anything we can ask to make the entire wish experience all about them,” List explains.

List has been a Make a Wish volunteer since 1992, right after she graduated from college. Since starting she’s lost count of how many wishes she’s helped make happen. With a busy family of her own, she says she’s able to help coordinate anywhere between 3-6 wishes a year, depending on how involved they are. “Right now I have 5 wishes I’m working on, and all but two are children in Wilton.”

There are four basic categories of wishes:  “I want to be something”–a policeman or a princess for a day, for example; “I want to meet someone”–most often someone famous; “I want to go somewhere”–a travel wish; or “I want to get something”–a new computer, a pony, or something similar.

List also said there is a newer kind of wish, a pay-it-forward wish.

“I’ve done so many kinds of wishes and they’re all moving and special for different reasons. A wish I worked on a long time ago, the family had come from Serbo-Croatia, during a time of war. The child was diagnosed with bone cancer but there was nothing to be done by the time the child had come to Dana Farber Cancer Institute–the cancer was very far spread. He was a teenager, and very aware of how serious his situation was, as well as how serious the situation was for his family back home. His wish was for winter coats for his family. We ended up doing a shopping spree, and kept trying to convince him to get something, but he knew he was at the end of his life and only wanted to buy things for his family.”

Typically, the wish grantors make sure that the wish is for the child and that parents don’t intervene; List said that in the case of the Boston wish, it was clear it was really the child’s wish.

“There are some rules, which usually involve safety, but it’s really just within the boundaries of what a child can wish that will make them happy,” she explains.

She has countless stories in which bittersweet happiness and sadness is intertwined, having been an active participant in the wishes of children facing major life challenges, many of them terminal. That’s a heavy burden to carry, even as an observer.

“We go through that at training, to learn how to deal with that. I also work with children with special needs, so it’s part of what I do professionally. I look at it as an opportunity to bring a special, wonderful thing into families’ lives, when they’re going through something difficult, and I focus on the joy and happiness part, not the really challenging part,” List says.

Often, family members of wish recipients are so grateful, they become Make-a-Wish grantors and volunteers themselves as a means to give back and say thanks. “It brings people to Make a Wish after seeing the experience of what a wish can do,” List says.

It’s a sentiment that the Wrights can completely understand.

“Make a Wish is amazing. When you’re at your lowest, when you experience hardships such as this, it’s when you realize how good people are, and that there are good people out there,” Dana says, getting emotional. “That’s when you see the best of people. Deborah is a wonderful person. When somebody does something so nice for you, you know that there’s no way you can make it up to them. But you can definitely pay it forward, and try to do something nice for someone else.”

Ella’s Wish

“She’s such a sweet, adorable girl who just wants to be with her friends. When we met with her, the first thing she said to us was, ‘I wish to be with my friends.’ It’s just the most incredible wish,” List says.

“She said, ‘I want a playground.’ Because we can’t build a playset outside because it would just be too tempting,” says Dana. “She’d only be able to play on it in fall and early winter. So they asked her what she’d want and she told them a slide, and a climbing wall and a sand table.”

The solution they came up with is to turn the house’s attached garage into a play space for Ella, and build a new detached garage on the property.

“It’s a huge blank space where we can create this incredible place for Ella. It’s going to meet all of her needs–it will have temperature control; we’re going to work with her therapy team at school so it will have some therapeutic aspects; it can grow with her as she gets older; it will also be a part of the house where doors can be closed so she can reduce her stimulation. It will be a place she can go and have fun and invite a few friends at a time to be with her, but it can also be a place that’s safe for her,” List explains.

While that sounds like a significant change, List says that Make-a-Wish does have limits on what it can and can’t do. “We are not allowed to change the tax value of a house. We can’t do ‘Extreme Home Makeover.'”

The work they can do will be paid for by a very limited Make a Wish budget and through donations from vendors and service people, including several Wilton residents and business owners:  Kara Bingaman is a designer who has volunteered to help with the design; Matt Schmitt is helping with construction; Brian Andronaco of Andronaco Excavating and Anderson’s Septic took care of septic testing; and Signature Style is taking part as well. And the generosity extends outside the immediate community, with help from the staff at Stepping Stones Children’s Museum and Redi Cut Carpet in Westport.

“People have been extraordinarily generous. When people find out why you’re doing this, it’s amazing what they’ll do,” List says.

Ella’s parents would be responsible for paying for all costs associated with building the new garage.

Here Comes the Hitch

The only one catch–they need to ask the Town of Wilton for a variance to build that additional structure.

“We didn’t think we’d have any problems, that we’d just have to get a permit to build it. But once we got the survey, it was determined that there was an area off our property, a paved area of the cul-de-sac on the street that’s considered part of our property. Even though it’s a public space–it’s a place where people park to go to our neighbors’ houses, it’s a place where the EMTs and fire department train–they still consider it part of our property,” Dana explains.

It’s a quirky, unique situation that requires the Wrights to go in front of the Zoning Board of Appeals (ZBA) at tonight’s meeting, Monday, Sept. 15. Hopefully it will be an easy request for the board to approve.

“I think someone from Make a Wish will be at the hearing, just to make sure that it gets explained–the whole reason they’re doing this is because it’s a wish,” says List, who adds that many of the Wrights’ neighbors have written letters in support of the project. “They are heavily supported by their neighbors. Everyone knows, when an ambulance comes down the street, it’s for Ella.”

If the Zoning Board of Appeals gives its approval to the plan for the Wrights’ new garage, then the Make a Wish team will be able to get started just as soon as the old garage gets cleared out. “We’re all hoping early October we’ll be able to start. We can’t get in there until it’s cleared out and we get drywall put up to start creating it as a room,” List says.

Everyone involved is hoping that plan can start to take shape.

“Ella should have a place to play, a place that’s free with no restrictions,” says her mom.

GOOD Morning Wilton will keep you posted on what happens with the ZBA application as well as the progress of renovation should the Wrights and Make a Wish be allowed to proceed. Anyone interested in making a donation or getting involved with Make a Wish can contact the CT office at 203.261.9044 or visit the Make a Wish CT website.