TORRINGTON – It’s a cliché now, quoted in jest and by exhausted parents, but nonetheless, an ancient African proverb makes the point that “it takes a village to raise a child.”
The original quote is something closer to “a child does not grow up in a single home,” translated from Lunyoro. That is more akin to the truth.
The home is the center of a child’s life, but it branches out like a tree. It branches into school, into sports, into extracurricular activities, and into friendships, to name a few. All of these branches have an impact on a child and play a role in supporting her. These branches have to work in relative harmony to provide the child with the support it needs – a community or, as the proverb says, a village.
Mia Winter needs that village on her side.
Mia’s mom, Ashley Winter, knew something wasn’t right before Mia was born.
Ashley noticed that Mia wasn’t moving well more than a month before her due date. Doctors sprang into action, and Mia was born 10 weeks early. Mia, accompanied by her father Andrew Winter, was airlifted to a children’s hospital in Denver, Colo. While Mia was in the neonatal intensive care unit, the medical staff began to gauge the full range of challenges the young family was facing.
“She never attached to the bottle,” Ashley said. “We were there for about a month, and then we graduated to the seventh floor NICU. One of the nurses that was there said I think she has this symptom. I’ve worked with one baby like this before and I think you should start looking into it.”
That was the first time Ashley and Andrew had ever heard of Prader-Willi Syndrome, the disorder that has shaped their lives ever since. Eventually, doctors were able to perform a test to confirm the diagnosis.
In babies, Prader-Willi is characterized by weak muscle tone – the reason why Mia wasn’t kicking in the womb, feeding difficulties, poor growth and delayed development, according to the US National Library of Medicine. At about three years old, difficult feedings turns into an insatiable appetite.
Doctors installed a feeding tube into the newborn, and the family was able to return home and start figuring how they were going to manage parenthood and Prader-Willi – a first, on both accounts.
“She did the surgery and the next day they said ‘okay, bye.’ After two months we were like ‘okay,’” Ashley said.
“They gave us a lot of negative. They said she wouldn’t be able to walk for a long time, she was going to have severe mental disabilities, and they give us all that negative – but she’s thriving right now.”
Thriving right now
Nine years later, Mia is flying around the house like her younger siblings, Amarie (6) and Aceson (3). Prader-Willi isn’t apparent from the outside, but there are a few physical characteristic Prader-Willi patients share – almond-shaped eyes, a downturned mouth, and a narrow head to name a few.
But the burden of Prader-Willi isn’t what it does to a person physically.
“The big part of it is that she has an insatiable appetite,” Ashley said. “Her appetite is what people feel when we haven’t eaten for four days. She’s like that 24/7. We lock our food in the cupboards because she’s never able to feel full. She could potentially eat herself to death.”
To combat that hunger, Mia will eat whatever she can get her hands, Andrew said.
“It’s pretty tough,” Andrew said. “We have to have locks on everything – the fridge, cupboards. She’s always looking for it. If we leave something out on accident, she’ll go get it. If we throw pizza way that we didn’t eat, she’ll get it if she wants it.”
The catch to Prader-Willi is that Mia can never feel full, and there’s no drug on the market to change that. But, because of the poor muscle tone cause by the disease, Mia is on a strict diet of 1,000 calories or less a day, because the reduced muscle tone makes it impossible to burn the calories.
That’s less than half of the normal for a girl who literally cannot feel full.
“We have to monitor the calories because they have such low muscle tone that they can’t burn off the calories,” Ashley said. “She takes a shot of growth hormone every night to try to help with that effort – calorie intake is usually 800-1000 calories a day. We’ve been monitoring that every day since we got home.”
And the consequences are severe. According to the Prader-Willi Syndrome Association, 486 families reported a death related to Prader-Willi between 1973 and 2015. The causes ranged from respiratory issues, to gastrointestinal problems, to choking – and the Winters have to keep a constant eye on Mia to avoid possibly joining those statistics.
That makes holidays – most of which are centered around food or candy Mia can’t have – especially hard.
“Halloween is really hard because she loves to dress up,” Ashley said. “She really wants the candy, but we’ll be like ‘okay the switch witch is coming. They’re going to change all your candy for toys.’ She gets toys.”
That’s where the ‘village’ comes in. Mia has a special helper while she’s at school to make sure she doesn’t overdo it by getting into other students’ lunchboxes. There’s always a sugar-free treat for Mia when birthdays are celebrated at school. But still, she misses out.
“It’s hard for her to live like a normal child,” Ashley said. “She can’t go to birthday parties because she doesn’t want to be the awkward person there was apparently watching her. But I can’t leave her there and supervise because she could eat herself to death.”
There is one place, though, where Mia fits right in.
In the basement of the Winters’ home in Torrington, there are several tables filled with cups – plastic cups with straws, thermos-style coffee cups, tumblers, even aluminum sippy cups. They start out as plain white vessels, and over the course of a few days, some gain a wood grain pattern, some will look like pencils, some have names emblazoned on the side, but each one is unique. They all have one identical thing in common, however – an orange ribbon hand-painted on the bottom.
That’s the color for Prader-Willi Syndrome. Ashley puts it on each cup that passes through what she calls her “zen place” – it’s the home of Cups-4-A-Cause. Winter makes each cup to the customer’s specific requests, and the proceeds go toward helping Mia go to the Prader-Willi Derby in Denver.
The derby is a fundraising event for the PWSA. The aim is to research the disorder and raise money for the PWS Clinic at Children’s Hospital-Colorado, establish scholarships and provide long-term care, as PWS patients can’t live on their own without supervision. The PWSA events, Ashley said, help Mia feel normal.
“We go to Denver at least twice a year for all of her doctors’ appointments,” Ashley said. “There is one where we go to see all the specialists in two or three days, and when we first went we just couldn’t get out of our minds. We saw one girl who was really severely overweight and was constantly asking for more food. Then we saw someone who’s actually going to college and able to ride the bus. When you see people with her syndrome that are actually going to college, it gives us hope that she can have a normal life.”
And that’s where the cups come in.
The plain white cups go through a glitter and hand-painting process, if that’s what the customer wants. Then a wrap from a decal printer is applied, and the whole thing is coated in epoxy and set to spin on a rotisserie, which ensures the epoxy dries evenly.
“Every morning before I go to work I make sure cups are turning,” Ashley said. “When I come home from lunch I check on the cups and then when I get home, I make dinner and then do some more work. We’re all about spreading awareness.”
Eventually, Ashley said she hopes the cups will bring in enough money for the family to go see a leading Prader-Willi doctor in Florida. The cups start at $25 and max out around $50.
At the moment, Ashley said there’s a waitlist for cups – which is a good problem, because it means the village is taking care of one of its own.
Beth Stoner, Ashley’s friend who helps make the cups, said it’s inspiring to see the family work for Mia, and to see the community help out as well.
“The whole family works so hard to support me and I feel like a little bit of my time,” Stoner said. If that’s what I can do to help, then I want to. I think when you have a child as special as Mia is, I think it definitely takes a village.”