Addie Garvey, born with Moebius syndrome, organizes 'Kindness Is Everything' campaign to champion inclusivity

Addison “Addie” Garvey is a Melville 10-year-old who enjoys dance and cheerleading, loves to read and write and plays drums in a band. She thrives in her fourth-grade class at Sunquam Elementary School in Melville, where she is a member of the student council.

Addie was born with Moebius syndrome, a rare neurological condition that causes facial paralysis and other complications, and is nonverbal. To help others like her, she and her family established the Kindness Is Everything campaign in 2019 to educate and raise awareness for her disease, with the goal of inclusivity, and the importance of accepting others for who they are.

“It means that you should treat everyone kindly even if they look different,” Addie said of the campaign, through the assistance of technology.

Addie’s platform has allowed her to express her vision at a young age, with encouragement from two strong and successful women in her family — her mother, Jennifer Garvey, and her aunt, Cori Anne Kopke.

You should treat everyone kindly even if they look different.

- Addie Garvey, Melville fourth grader

“Addie was put on this earth to teach people something. She has touched so many lives and she’s just this light of inspiration to so many,” Garvey said. “Addie hopes to inspire people to be kind, no matter what differences they see in others. She wants to show that having Moebius syndrome doesn’t limit what you can do, it just makes you unique.”

Addie receives intense physical therapy, occupational therapy, speech and feeding therapies. She wears glasses and a hearing aid and uses an iPhone paired with the Proloquo4Text app voice-to-text software to express herself. Her family and teachers said she is an intelligent girl with a lot to say.

“Addison is an absolute joy to have in my classroom. She inspires me every day with her bravery, determination and optimistic mindset,” said her fourth-grade teacher, Allison Hough, of Massapequa. “She never lets anything hold her back and reminds us all that we can achieve anything when we stay true to ourselves and push through challenges with courage.”

An avid reader and writer, Addie hopes to become a children’s book author when she grows up to inspire people and “teach important lessons, and help others feel seen and understood.”

“She wants to write books that show kids it’s okay to be different and that kindness can make the world a better place,” said Garvey, who also is mother to Jack, 8, Ellie, 6, and Hudson, 3, who do not have Moebius syndrome. “She’s just a very happy kid who recognizes when someone is feeling different and makes them feel great.”

An uncertain beginning

When she and her husband, Jim, were first expecting their eldest child, Garvey was carrying twins. Around 12 weeks, the twin was lost to what is known as vanishing twin syndrome (VTS), and Addie became a solo pregnancy.

“That was a little devastating,” said Garvey, now 36, and a fourth-grade teacher in the New Hyde Park-Garden City Park school district. “Then around the 20-week scan we went in and we saw that she had a club foot.”

When Addie was born, she had no sucking or gag reflex and was administered oxygen through a nasal cannula, but doctors did not have a diagnosis. She was taken to the neonatal intensive care unit (NICU) for testing and shortly after transferred to North Shore University Hospital in Manhasset for more intensive care.

The day Addie was born, I dove into research on the internet and three days later, I found Moebius syndrome.

- Jim Garvey, Addie's father

“The day Addie was born, I dove into research on the internet and three days later, I found Moebius syndrome,” said Jim Garvey, now 43. “I’m a mortgage banker, and it was just a Google search as a desperate parent trying to get answers, but I knew that’s what she had.”

The Garveys showed their findings to doctors, who dismissed it due to the rarity of the disease.

Addie remained in the NICU for 30 days with a diagnosis of failure to thrive. While she was awaiting surgery for the placement of a nasogastric tube, she had an emergency medical episode that caused her to be intubated for a week.

“One doctor recommended a tracheostomy, another said palliative care would come to visit,” Jennifer Garvey said. “I’m 25, and it’s my first baby. We were not prepared for any of this.”

The Garveys found a geneticist at Mount Sinai Hospital in Manhattan, who recommended they bring their daughter in for a clinical diagnosis, eventually confirming Moebius syndrome.

“I think we were just really happy that we had an answer,” said Jim Garvey, adding the couple began early intervention strategies right away. “That’s the hardest thing for parents — when you don’t know."

What is Moebius syndrome?

Moebius syndrome is a congenital condition that affects the nerves of the facial muscles, according to Dr. Brian Goldstein, Addie’s pediatrician and the chief quality officer of Allied Physicians Group in Melville.

“Children with Moebius often cannot raise their eyebrows, cannot smile and have difficulty swallowing,” he said. “These children often need a tube in the throat to breathe properly and a tube in the stomach for nutrition.”

Doctors don’t know the cause of Moebius syndrome. Addie has endured multiple surgeries for her eyes, mouth and jaw, but Goldstein noted that medical and technological advancement will continue to benefit children like her.

Addie is an inspiration, and I love watching her grow and achieve.

- Dr. Brian Goldstein, Addie’s pediatrician

“The good news is that Moebius syndrome does not affect the brain, and life expectancy is no different than the general population,” he said. “Addie is an inspiration, and I love watching her grow and achieve. It has been a pleasure to take care of her and her siblings.”

Addie sleeps on a ventilator at night but can care for her basic needs like showering and using the bathroom. She doesn’t have a blink reflex, but learned how to blink voluntarily and applies eyedrops to lubricate her eyes.

The Garveys’ schedule has been full through the years, at one point rotating between occupational, physical and speech therapies, visits from teachers and nutritionists as well as family training.

“We called it Addie Inc. because it really was like running a business for her,” Jennifer Garvey said. “If we didn’t have those resources, she wouldn’t be where she is today.”

Addie’s father added that, “Getting past those humps of advocating for your child as a parent was a big thing. She’s defied all odds of what doctors have projected she would be. And we just, we’ve been really lucky and blessed to have, like, the right people saying, ‘Do you know how amazing your child is?’ ”

Suzanne Rowan, of Garden City, a teacher who works with Addie on her hearing, said her student is “an old soul who perseveres no matter what challenge comes her way.”

“Her kindness beams throughout the hallways at school,” said Rowan. “Everyone knows who Addie is, and every student stops to say hi to her with a big smile."

Raising awareness

Kopke is Addie’s aunt and godmother, as well as the owner of Cutchogue-based Backyard Brine pickle company. She also co-founded the Kindness Is Everything campaign along with her niece.

“Addie is the heart of our family, and her kindness radiates in a way that touches everyone she meets. Kindness Is Everything campaign was born out of a desire to honor her and help raise awareness for Moebius syndrome,” said Kopke, whose specialty food company donates 5% of sales of its Everything Bread & Butter pickles to the campaign. “It’s helping to spread awareness and make the world a little kinder, one small act at a time, and allowing us to treat everyone with compassion and empathy.”

We as parents teach our children how to treat others.

- Jennifer Garvey, Addie's mother

Garvey emphasized it is important to support others, raise awareness and make sure no one feels alone. “Even if somebody looks differently, we as parents teach our children how to treat others, and it really just opens up the communication instead of shunning the child who’s curious,” she said.

She added the local community has been kind to not only her daughter, but in spreading awareness for Moebius as well.

Addie’s school community recently turned out in purple gear in honor of Moebius Syndrome Awareness Day on Jan. 24. Her family also hosted an event at Bounce! Syosset to raise awareness for Moebius syndrome, which saw support from nearly 200 people. The venue donated 40% of proceeds from ticket sales, totaling $1,600, and a silent auction, raffle and sale of merchandise raised more than $3,500.

“The kids had so much fun and everyone was raving about it,” said Garvey. “One boy came who had Moebius. He was so happy because it was the first time meeting someone like him and he said he doesn’t feel alone anymore.”

Jenny Whitman is the executive director of the Denver-based nonprofit Moebius Syndrome Foundation, founded in 1994. The foundation — which includes a scientific advisory board whose members range from plastic surgeons and pulmonary doctors to dentists and psychologists — holds conferences, live events and educational scholarships as a way for people to come together and learn about Moebius syndrome.

“Our mission is to provide information and support to individuals and families, promote awareness and advocate for scientific research for Moebius syndrome, which is a rare neurological condition that affects 2 to 20 per million births,” said Whitman, noting that the disease affects men and women equally. “Moebius is diagnosed by an ophthalmologist or neurologist after birth. It is common for children to have feeding tubes, as swallowing and speaking is very difficult for children when they’re first born.”

There are between 10,000 and 25,000 cases of Moebius syndrome in the world, according to Whitman, and the Moebius Syndrome Foundation’s records show 39 people living in New York with the rare congenital disease. There is currently no cure or treatment.

“There has been so little understanding about Moebius syndrome in the medical community,” Whitman said. “We can’t find a genetic link yet. However, we can help address common symptoms such as vision loss and dry eyes and make that better for people born with Moebius.”  

A bright future

Addie’s speech-language pathologist, Camellia Amadio, has been working with her for years and called her “a very special young lady.”

“What I can say without hesitation is that she is very determined, hardworking, compassionate and smart,” said Amadio, of Smithtown. “I know she will continue to be a success in anything she puts her mind to.”

The Garveys are always mindful of what lies ahead in their daughter’s journey, and said the reason they have come so far is that they have always “assumed competence,” meaning they work under the assumption Addie is capable of doing things.

These kids deserve every opportunity to show us what they can do.

- Jennifer Garvey, Addie's mother

“I think that’s very important for our medical experts, educators and all people in the world to always assume competence for people with disabilities,” Garvey said. “That mindset can really shift the whole outcome and trajectory of one’s life. These kids deserve every opportunity to show us what they can do.”