North Charleston brothers heading to Disney with help from holiday cookie sales

Nine year old Max High, talks with Firefighter John Reindollar, Sparky the dog and his grandfather Danny Dorman, who was on hand for the surprise visit from the North Charleston Fire Department who came for the grand announcement about their theme park vacation in Florida. High and his brother Alex High have Spinal Muscular Atrophy and are receiving a weeklong trip to the Florida theme parks through an organization called Baking Memories 4 Kids, which raises money through holiday cookie sales.

Nine-year-old Max High and his brother Alex, 3, knew Tuesday morning a fire truck was stopping by their North Charleston home.

What they weren’t expecting when a parade of trucks from Fire Station No. 5 pulled into their Windsor Hill cul-de-sac — lights blazing and sirens wailing — was Frank Squeo, founder of the nonprofit Baking Memories 4 Kids.

Friends, family and co-workers lined the suburban street as Squeo, holding a container of cookies and a stuffed Mickey Mouse, emerged from the fire truck and knelt in front of the boys’ wheelchairs.

“Hey, boys, I have a little surprise for you today,” he told them. “You’re all going to Disney World, SeaWorld and all of the Florida amusement parks with your whole family.”

“No way!” Max exclaimed. “I want to go to Build-A-Dino (at Disney)!”

Specifically, the Summerville Catholic student wants to build his favorite dinosaur, a pteranodon “with a silent ‘p’.”

Max and his little brother, sons of Maj. Aaron and Traci High, both have spinal muscular atrophy, a rare degenerative genetic disorder that affects the spinal cord and nerves.

Squeo is a testicular cancer survivor from New York who started Baking Memories 4 Kids in 2012 as a way of giving back. By selling chocolate chip cookies made with his childhood recipe, he raises money to send seriously ill children and their families on all-expenses paid vacations to Orlando.

This year, a dozen families will be given trips. The cookies, only available in November and December via bakingmemories4kids.com, cost $24.99 plus shipping for a 1¼-pound container, and $20 from each sale goes toward the trips.

“When you are able to give kids with a life-threatening illness a trip where they can forget about their disease for one week, there are no words to describe it,” said Squeo, the owner of a pool cleaning company.

Last year, after seeing a segment about the volunteer-run foundation on “Today,” Tammy Cook of Birmingham, Ala., wanted to order some cookies. When she visited the website, she noticed a link for nominating a family and thought of her niece, Traci High.

“I just knew their daily struggles with SMA, and Aaron’s often off serving our country flying to other countries, and they’re so humble about everything and so gracious,” said Cook, who was in North Charleston on Tuesday for the announcement.

Squeo said everyone who has been nominated so far has received a trip, more than 20 families in the last three years.

“This family, if I had to choose, they would be a no-brainer,” he said. “But we have, thank God, enough funds to send every family that comes to us. We are growing and people are buying more cookies. Without the sales, we don’t exist.”

It takes about 500 containers of cookies, or $10,000, to fund the average trip.

The High family will drive their specially outfitted conversion van to Orlando in February, pulling a trailer full of necessary medical equipment behind it. They will stay at Give Kids the World Village, a resort for children with life-threatening illnesses, and visit Disney, Universal, SeaWorld and Legoland.

“For us to load up and travel is a pretty big deal,” said Aaron High, who spent much of last year deployed. “A weekend vacation really isn’t possible for us.”

The boys require around-the-clock care and are immunosuppressed, meaning they easily get sick when exposed to germs.

Max was diagnosed with SMA when he was 10 months old. Alex also was diagnosed as an infant.

“We were given a 50 percent chance that Max would make it to his second birthday when he was diagnosed,” said Traci High. At two, Max got sick and hospice was called in, but the boy recovered.

“They prepared us for the fact that he wasn’t going to recover from that and he did,” she said. “These kids are a lot stronger than a lot of times doctors give them credit for.”

At any rate, many of the youngsters diagnosed don’t live past their childhoods.

“Unfortunately, my sons miss out on a lot of things that a lot of normal average individuals do,” said Aaron. “We want them both to live a very full life. If it’s not a long life, it needs to be a full life, full of experiences. For Mr. Frank to choose our family for this wonderful experience means the world to us and I’m extremely humbled.”

Reach Brenda Rindge at 843-937-5713 or brindge@postandcourier.com.