FORT KENT, Maine – A Fort Kent mother whose middle daughter was diagnosed with a rare medical condition wants people to look beyond physical differences and treat her daughter like any other child.
Quinlee Cote, 5, is one of fewer than 3,000 people in the world with PIK3CA-related overgrowth syndrome, which causes one side of her body to grow faster than the other due to more rapid cell division on that side, said her mother, Taylor Pelletier.
Because the condition is so rare, it is unsure what the future holds medically for the little girl. What Pelletier wants people to know most about Quinlee is that, like other children with serious medical conditions, she’s just a kid who brings joy, love and laughter to those around her.
Pelletier began trying to raise public awareness of Quinlee’s medical condition when she realized that not all people respond politely when they see her little girl.
“It was hard to walk through the grocery store after she was born because people would ask, ‘What’s wrong with her?’” Pelletier said. “First off, nothing is wrong with her and that is really rude. She’s just different, so be kind.”
Pelletier noticed an overgrowth on her baby’s cheek shortly after Quinlee was born.
“A couple of weeks later I looked at her hands and feet and thought, ‘Oh, my goodness,’” Pelletier said.
Quinlee’s gums, tongue and even her hair grow faster on her left side.
The syndrome is a genetic disorder that leads to overgrowth of various body parts due to changes in a gene called PIK3CA, according to the National Organization for Rare Disorders. The gene helps make a protein regulating cell growth, division and survival.
There is no known treatment for PIK3CA overgrowth syndrome. Quinlee needs regular medical checkups because she is at high risk for related conditions such as Wilms Tumor, a type of children’s kidney cancer. In fact, she has a rare tumor on her spleen which requires monitoring, her mother said.
“One of the unknowns of the disorder is it can slow down or it can get worse when she hits puberty age, because that is when cells start growing faster everywhere else,” Pelletier said. “Scientists don’t have enough research on it to be able to map out or determine what will happen.”
She is thankful for PALS, or Patient Airlift Services, a free flight service that has flown her and her daughter to medical appointments every three months for the past five years.
Pelletier was a guest speaker at the PALS Sky Hope Gala in Boston on April 27, where she shared her message and thanked flight service staff for transporting Quinlee to her medical appointments at Boston Children’s Hospital over the years.
The free medical flights make it significantly easier and less stressful to travel, Pelletier said.
Quinlee is in kindergarten at Fort Kent Elementary School. She is a good student who has many friends and is treated with acceptance — and so far, she hasn’t had to deal with any bullies, Pelletier said.
“That is one of my big worries about her being in school, but we have a great community and like I said she’s excelling,” Pelletier said.
To help raise awareness in the community of Quinlee’s medical condition, Pelletier started a Facebook page, Quinlee Rae’s Journey. When Quinlee makes new friends, Pelletier reaches out to parents to explain the condition and offer to answer questions, she said.
Pelletier is a single mother also to Paisley, 8, and Lucy, 2. She owns a popular home bakery business, Q and P Cakes, and works as a waitress part time. She has an education degree and hopes to teach science in the near future.
Quinlee has come a long way, her mother said. Though at first they didn’t know if she would walk, talk or smile, she has defied her condition to do all of those and is just a regular little kid, Pelletier said.
Quinlee loves Bluey dolls, coloring, drawing, reading and writing.
“She is very creative and loves the arts,” Pelletier said. “She really is a little girl, just with an extra kissable cheek is what we call it.”