above: Natalie and Carter Avellone
Photography by Andrea Carson
In November 2015, after a healthy pregnancy, Natalie and Pete Avellone joyfully welcomed their second child—a baby boy they named Carter. At seven pounds, five ounces, Carter appeared to be thriving. While he had trouble meeting some initial milestones, nothing seemed to be particularly concerning.
However, as time went on, the Avellones’ worries over their son’s development began to grow. He had difficulty rolling over and sitting up. He struggled to hold down formula and began to rapidly lose weight. His pediatrician, who noticed that his hands were balled up, recommended a neurology consult.
An MRI revealed low white matter, the tissue needed for mental function, memory, emotions and movement. Eventually, Carter was diagnosed with Spastic Paraplegia 3A (also known as SPG3A), a type of Cerebral Palsy characterized by weakness of the legs and muscle deficiency.
NAVIGATING A WORLD OF UNKNOWNS
With the gravity of this diagnosis and a future filled with uncertainty, Natalie and Pete were in shock. Even after seeing multiple doctors, they were still unsure of what to do next. Then the universe intervened, as it often does.
On a trip to a cousin’s wedding in Hawaii, Natalie saw a boy with ankle foot orthoses, devices that help stabilize joints on the lower limbs. Natalie watched as he walked along, with the help of crutches—something she and Pete dreamed of for Carter.
After connecting with the boy’s mother, Natalie learned that he had cerebral palsy and was a patient at The Children’s Hospital of Los Angeles. The mother offered to reach out to her son’s surgeon to see if he could recommend a doctor back east. That is when they first learned about Dr. Benjamin Shore at Boston Children’s Hospital (BCH). “We immediately switched everything over and realized what a well-oiled machine BCH is,” says Natalie. “It was the best decision we’ve ever made.”
Pete’s dad, Dr. Joseph Avellone, is a retired surgeon himself and lives in the Boston area. He attends almost every one of Carter’s appointments, something Natalie and Pete are eternally grateful for. Dr. Avellone even started the Carter Foundation for Neurologic Research to sponsor research into the cause and treatment of rare neurologic diseases in children. Also members of “Team Carter” are Dr. Avellone’s wife Sandy, Natalie’s dad Rod and wife Christine and nanny Angie Simbana, who Natalie says is “like family.”
Carter is an integral part of the New Canaan community—whether as an honorary member of the Rams football team, with friends during tutoring or just hanging out with the boys.
ADVOCATING FOR HEALTH (AND HAPPINESS)
Learning to become your child’s health advocate is not an easy job, and it certainly doesn’t come with a set of instructions. Finding the best path for Carter socially, emotionally and academically has been an educational process for the Avellones—but it’s one they have become experts at. For Natalie and Pete, ensuring that the lives of Carter and his older sister Sienna (10) are full, active and happy is always their top priority. But, as the saying goes, “It takes a village to raise a child,” and New Canaan’s close-knit community has enabled Carter and the Avellones to thrive in many ways.
“The way Carter is treated here is like he’s the most special person. All the kids want to help him and they treat him with so much love and kindness,” says Natalie. “They just know how to include him while also being aware of his limitations with speech, and they know how to ask the right kind of questions that he can respond to.” Whether it’s showing up at a friend’s sporting event to cheer them on from the sidelines, attending a birthday party or having a playdate, Carter is always involved. To know him is to love him, and it is abundantly clear that the love is requited.
Julien and Wesley are often by Carter’s side—whether visiting him during a hospital stay, horsing around in the summer or, in this case, prepping for photo shoots with Natalie and their mom Courtney.
SOUTH PAWS STEP UP
When he was four years old, Carter began working with tutor Lisa Charkales, who also happened to be a teacher at New Canaan’s South School. The two created a special relationship and Charkales had a deep understanding of Carter’s challenges, so the Avellones were thrilled when Carter got her as his kindergarten teacher at South.
“Lisa set the tone for Carter,” says Natalie, describing how Charkales created an environment in her classroom that was inclusive of Carter and that all the kids enjoyed being part of. According to Charkales, the other students were drawn to Carter and wanted to help him. “He formed such strong bonds with them and they still stand with each other today in third grade,” the teacher says.
Charkales credits his parents with giving Carter a strong sense of empowerment, so that he approaches challenges with a can-do attitude. “Natalie and Pete are all about awareness—they don’t hide anything,” Charkales says. “I think that’s part of the reason that Carter is so confident.”
The introduction Carter had to school surpassed anything the Avellones could have hoped for, but they wondered if the experience he had in kindergarten could be replicated. Now a third-grader, the Avellones say each year has supplied a positive learning environment for Carter. “Every teacher that he’s had at South—Mrs. Charkales, Mrs. Young, Mrs. Jefferies and Mrs. Nicholas and his Physical Therapist Allison Larow—have all been so amazing,” Natalie says.
Protective and loving, Carter’s big sister Sienna not only helps care for him, but she also knows how to make him laugh.
CONNECTION COUNTS
While New Canaan and South School have been pillars of support for the Avellones, Natalie says it can be difficult to connect to other parents whose children also face obstacles. She says that there is a feeling of isolation that goes along with having a child whose challenges are the result of such a rare condition, especially in the early stages of the diagnosis.
Other parents told the Avellones that it would eventually get easier, which Natalie says she had a hard time believing. But in hindsight, she can see that they were right. “It will always be challenging, but emotionally, it does get easier to handle,” she says.
In an effort to connect with others and share their story, Natalie started an Instagram account in April of 2020 called @mycourageouscarter. “Carter is going through a lot, all of the time, and in a way that many people just can’t comprehend,” says Natalie. “I want others to know that we are approachable, and we can be involved in the same things as other families.” Natalie also openly shares the importance of keeping herself in a healthy emotional place so that she can be there for Carter in the way that he needs. Whether it’s therapy or medication, Natalie says “You need to do what you need to do to be able to show up each day with a brave face.”
UNBREAKABLE BOND
The Avellones know they could not face these challenges without the love and support of so many around them, but they also cherish the bond they share as a family—especially the bond between Carter and his sister. “She plays video games with him, acts silly and does anything she can to make him laugh,” Natalie says of Sienna. “She even does some of his medical stuff; she knows so much.”
Natalie also appreciates how good her husband is at making the small moments really count. “Pete can do it all but is especially good at spending quality time with Carter,” she says. “While I’m racing around getting things organized, Pete will snuggle up with him and read a book or watch a soccer documentary.”
While the Avellone family has faced more than their fair share of challenges, they are also a testament to life’s most valuable lesson—that love will conquer all. Carter’s future remains beautifully bright, surrounded and supported by a loving family and community.
You can learn more about kids like Carter at kidswithspg3a.com. Kids with SPG3A is an organization the Avellones created with another family whose daughter is living the rare genetic disease. Also follow @mycourageouscarter to see Carter living his best life.
HEART to HEART with NATALIE AVELLONE
Carter is a familiar face around New Canaan, especially at South School and the sports fields. What message would you like to share with anyone (adults or kids) who doesn’t know you but might be curious about Carter. I would say don’t be afraid afraid to ask me, Pete, Carter or his sister Sienna questions! We appreciate that people would like to learn, understand and be informed. The more informed people are, the better! That allows the fear or weariness to subside and for relationships to blossom. I think it’s important for everyone to understand as much as they can so that they themselves can experience gratitude and empathy.
Carter’s friends are obviously a very important part of his life. Since they can’t always “play” in the traditional sense of the word, how do they interact and connect with one another? I have so many heartwarming stories about Carter’s buddies. When I try to help or assist, they say to me, “Don’t worry Mrs. Nat, we know how to do this.” You cannot imagine how much pride they have in supporting Carter. A lot of his friends join in on his PT, OT and speech sessions to pump him up. They love to play video games together, go to the movies, walk town and hit up the toy stores. Carter really loves sports, so he goes to a lot of games. He loves watching his friends play basketball, soccer, football. His friends at South even figured out a way for him to play socceer with his wheelchair. Kids are so creative and if there’s a will, there’s a way!
How has life changed since Carter got his motorized wheelchair? It’s been a huge change! Carter always used a manual wheelchair and everyone—kids, parents, etc.—would all push him around. With the motorized wheelchair, he is navigating himself. He recently went to a flag football game and one of his buddies got injured. Carter literally went full speed ahead without any hesitation to the middle of the field to check on his friend. During the game, the coaches were trying to keep Carter safe and not in the middle of the field, but how do you control a boy cruising around in a 300-pound motor wheelchair? I was like, “Sorry, dads/coaches, I can’t control him either!” This is an independent Carter, and it’s a blessing and a curse!