When people look at Scarlett they see a beautiful, blue-eyed baby. Scarlett will turn 1 on March 31 and she is starting to say “mama” and “dada.” She likes to stack up toys and knock them down. She loves music.
But unlike other one-year-olds, Scarlett can’t crawl. “She can’t pull herself up to try to walk like other kids her age, and she never will,” said Rachel Sepe, Scarlett’s mother, a Hough Street School fourth-grade teacher. “Everything is a challenge for her. She’s very intelligent, so she’s very frustrated that she can’t do what she wants to. She wants to move; she wants to go,” Rachel said. Scarlett used to be able to roll from one room to another, but she no longer can.
Scarlett was born with Spinal Muscular Atrophy (SMA), which is the number one genetic killer of infants and toddlers, according to the Spinal Muscular Atrophy Foundation.
SMA is a degenerative, genetic neuromuscular disease characterized by muscle atrophy and weakness. There is no cure for the disease.
When Rachel and Michael Sepe welcomed Scarlett into the world last year, she made their family of five complete. Her older brother and sister, Isabella, now almost 7, and Gavin, 3, fell in love with her immediately. She seemed perfectly healthy, although the nurse did notice a hand tremor. At six months, the Sepes noticed that Scarlett’s rolling had changed and noted it at her six-month doctor’s visit. Finally, at eight months old, the Sepe family’s fears were realized when Scarlett was diagnosed with SMA.
“Scarlett’s world is small. Her world is wherever we sit her,” Rachel said, adding that she would like for Scarlett to have more ability to explore. Within the next year, she will be getting a wheelchair that weighs 300 pounds.
The Sepe family has health insurance, but not every need is covered. Scarlett is having trouble sitting in the bathtub, but the insurance considers a special chair a convenience for the family and not a need, Rachel said.
“We can choose not to do some of those things, but I can’t imagine her not being part of our family, not being able to play with her brother and sister, to be stuck in one room her whole life,” Rachel said.
“Everything in her life needs to be adapted in the next year,” Rachel said. “We live in a 1929 bungalow. There is no way to get the wheelchair in our house. Our whole house needs to be completely redone,” she said. The Sepes will also need a vehicle that can hold the wheelchair.
To help meet those unmet needs, Sepe family friends are hosting a Wishes for Scarlett benefit at Wool Street Grill Sports Bar, from 2 to 6 p.m., April 14. The event will feature appetizers, and musical guest Underwater People. Wool Street is donating the venue and food.Tickets are $25 and available online. Donations are also accepted online.
The organizers are hoping to raise funds to meet Scarlett’s needs, as well as awareness of SMA, said Courtney Nisbet, a neonatal nurse and neighbor of the Sepes. She is organizing the event with Carla Janess. “We want to focus on the child and what her future might or might not be like,” she said.
Courtney said many people in the community have high regard for Rachel, as a 12-year teacher at Hough School.
“She has impacted our community in many ways. Teachers help our children grow. The work they do is amazing,” she said.
Rachel said she was uncomfortable, initially, accepting donations.
“It’s very humbling to receive financial help from friends, from people you talk to on the soccer field. We never did ask; we were offered. It took awhile for us to say OK; it took a dear friend who said, ‘this isn’t for you. It’s for Scarlett,’" she said. “It’s about making Scarlett’s life as normal as possible.”
Rachel said the Hough Street community, her students, her neighbors have been very supportive. The family lives near the school.
“This is the best neighborhood ever. I can’t imagine dealing with this and not living here,” she said.