KERSEY — “Jackson Strong,” a movement that has rapidly made its way throughout the local community, all stems from one little boy, and the passion his tight-knit family has for him and his journey.
Jackson Higgins was born Nov. 5, and is now almost 1 year old, said his mother, Laura Higgins. She and her husband, Nate, of Kersey, found out their baby had Down syndrome when she was 12 weeks pregnant. It’s common, she said, for these babies to have heart conditions.
Jackson had checkups every six weeks, and “kept confusing the doctors,” said Higgins. It appeared that he had a severe heart defect, but he wasn’t showing any symptoms of heart failure.
“He was supposed to have surgery at 6 months old, but he was still doing so well,” she said. “The doctor said we would let him continue to grow and get stronger.”
The family picked Oct. 4 of this year for Jackson’s open heart surgery, where they fixed and rebuilt some of the walls in his heart and fixed his bowel. He was home again in a little more than 48 hours, said Higgins.
“He is doing amazingly well,” she said.
Higgins’ brother, Greg Benini, who is also her neighbor in Kersey, said their family is a very “tight-knit group.”
“We all support each other in different ways,” he said. “I knew that when Jackson was going to have surgery, everyone would be worried. I knew it would be scary for Laura and Nate. I was kicking around ideas and trying to figure out how to ease some of that stress, and remind them of all of the love and support they have,” he said.
Hence, the “Jackson Strong” project.
The idea was to create a surprise video for the Higgins, said Benini, including all of their family and friends with a photo or video with an inspirational message. This also turned into “Jackson Strong” T-shirts, made by Dave’s Pro Shop of St. Marys, who donated some of the funds for the shirts. Everyone who wanted a shirt was given one –they didn’t purchase them.
Benini described his nephew as “everybody’s best friend.”
“I created a logo with ‘Jackson Strong,’” he said. “That represents how tough the little guy is. The surgery was supposed to happen between 3-6 months. He surprised everyone along the way.”
The logo includes three arrows, the symbol for a group called “The Lucky Few,” which represents the families who know someone with Down syndrome and were chosen to “rise up” and move forward.
Earlier this year, Benini began working on this project, thinking Jackson’s surgery would have been much sooner. He went old school –mailing letters to everyone they knew.
“I wanted it to be a surprise,” said Benini. “The challenge was getting the word out to everyone without them finding out. The anticipation was cool for everyone involved.”
Higgins said once finding out that Jackson had Down syndrome, they had a “new family” instantly. They shared his story on Facebook, and families began reaching out one after the other. They attended a get-together in Elk County last year in light of National Down Syndrome Day, where local people were very supportive.
About 250 “Jackson Strong” T-shirts have made their way out, said Benini, and the number is growing.
“Everyone wanted to join in and see how they could help,” he said.
The night prior to Jackson’s surgery, Laura and Nate Higgins sat down with a box that her brother had given them. When they opened it, they saw a letter, T-shirts with the logo and a zip drive.
Prior to the surgery, Higgins said everyone had been doing very nice things for the family, too, including giving them gifts, money and snacks to make their lives easier while staying in Pittsburgh.
“I figured it was a slideshow of pictures,” said Higgins.
Once the couple saw photos of friends wearing their “Jackson Strong” T-shirts, holding banners and videos of people sharing loving messages, the tears started flowing, she said. It was a complete surprise.
“It was amazing to see support from literally everyone,” she said. “I lost count at the 220 people who were in the video,” noting that it included family, friends, acquaintances, college friends, etc.
Benini said he asked people involved to be “authentic” and show their true selves while showing the Higgins support.
“This was the sense of calm we had been looking for since we found out about Jackson needing this surgery,” Higgins said. “The video brought us peace –we weren’t as worried as we had been.”
Many wore their shirts on the day of the surgery, and sent the couple pictures, Higgins said, and continue to show support, from family members to Elk County business owners and more.
Benini said many people have asked about Jackson and his story.
“These shirts are going to be all over town, and all over the country,” he said. “I wanted people to know what ‘Jackson Strong’ is.”
The Higgins were greeted back home with a “Welcome Home” sign in the front yard, she said. Jackson and his 2-year-old sister, Harper, are also best friends.
Through it all, Laura and Nate Higgins have found out how “lucky they really are,” she said, meeting many parents and families in Pittsburgh who provided comfort, regardless of their situation, and having an overwhelming sense of support back home.
The Higgins’ goal is to always show a way to “pay it forward,” she said, and to show kindness to everyone.
“We all have things we are dealing with, and we want the idea of ‘Jackson Strong’ to be that you’re never alone,” Higgins said. “We’re going to strive to mindfully show our support for people going through tough times, and to help them stay ‘Jackson Strong.’”
Benini has now created an Instagram page, @JacksonStrongProject, that people can follow, he said. Email firstname.lastname@example.org for more information.