In June 2009, Kim and Rick Pasco and their children, Ricky and Mackenzie, were busy packing for their road trip to Disney World, a much-needed vacation paid for by the Make-A-Wish Foundation.
A year before that, doctors diagnosed Ricky, now 14, with a rare life-threatening disease called common variable immunodeficiency, So the local community put up funds to send the family on the trip.
But just days before the four of them packed into the family’s vehicle and drove to Florida, the Pascos found out Mackenzie, now 10, also has CVID.
Despite the news, the family took the trip to Kissimmee’s Give Kids the World Village — a small, whimsically designed community for families and children with life-threatening illnesses.
In the village is the Castle of Miracles with an interior covered in stars bearing the signatures of more than 100,000 children who have stayed at the village. Ricky’s autographed star is there. A year later on a separate trip, Mackenzie’s would join his, too.
The 10-day trip ended, and the family returned to Hubbard with the news that both their children now would have to endure the constant doctor visits and the weekly routine of having plasma injected into their bodies.
Instead of sulking, Ricky and Mackenzie decided they wanted to provide other children in the Mahoning Valley an opportunity to experience the same magic in the Give Kids the World Village.
So the two children with admittedly uncertain futures started a fundraiser. They called it Ricky-Mack Giving Back.
“They came up to us and they said, ‘Mom and Dad, we want another wish,’” said Rick one recent afternoon in the Pasco home. “We already told them you already had your wish.”
“Basically,” Kim said, stepping in for her husband who was overcome by emotion and unable to finish, “they said they wanted to grant another wish for other children. They wanted other kids to experience what they did.”
Life is not easy for both children. Ricky hasn’t sat in a classroom since second grade and is taught in his home by a tutor; Mackenzie is able to attend school but misses large gaps of class when she becomes ill. Both are forced to wear surgical masks at certain times of the year.
“They are wearing it to protect themselves from you,” Rick has to tell people that give Ricky and Mackenzie odd looks while covering their faces.
But Ricky, as the parents described it, was the guinea pig and the hero for his little sister.
For the first 10 years of Ricky’s life, their son, now 14, was constantly becoming ill. One day it was a cold; another day it was a lung infection or an asthma attack. Doctors could not find the cause. Test after test revealed nothing.
Finally in 2008, a Youngstown doctor diagnosed Ricky with CVID.
“In a way it was such a relief” his father said. “Now we can deal with it.”
According to the National Institutes of Health, CVID effects about 1 in every 50,000 people and involves the mutation of the immune system, thus not allowing it to fight common diseases.
Or as Rick describes it: “If an immune system is made up of A, B, C, D and E, they only have A and B.”
Because the family knew the symptoms of CVID after Ricky’s ordeal, a doctor was easily able to diagnose Mackenzie.
The two children say they enjoyed the EPCOT Center, Indiana Jones show and the utopian feel of the Give Kids the World Village. But the trips, more importantly to Ricky and Mackenzie, brought the family closer.
“I didn’t worry about anything,” Ricky said. “We just bonded.”
“More than Disney itself, I like the trip down [to Florida] and the trip back,” Mackenzie said.
In the late summer 2009, the children with the help of the parents began coordinating with Make-A-Wish, printing fliers, finding sponsors, designing ornaments and collection jars, and seeking out a venue. In its three years of existence, Ricky-Mack has raised more than $19,000 and has helped pay the way for three Valley children with life-threatening diseases to visit Disney World.
Besides fundraising, the two have found ways to give back by speaking at Make-A-Wish events, on the radio and at blood drives in Akron.
This year’s fundraiser in October was at Fat’s Village Tavern along Hubbard’s Main Street. Tips accrued went directly to Make-A-Wish that night, and local businesses chipped in as well.
But Ricky almost didn’t make it to event. He was flown to Rainbows Children’s Hospital in August after a purple rash rapidly spread across his entire body.
“They are our heroes,” Kim said. Ricky told his parents, “No matter what, if I’m here or if I’m not, the fundraiser’s got to go on. And [Mackenzie] worked her butt off to make sure it happened for her brother.”
Ricky was out of the hospital after a week in intensive care and able to attend.
Kim said the event raised $6,229, “and 46 cents,” Mackenzie added, and will send a 14-year-old Girard girl to Disney World later this month. She will place her own star in the Castle of Miracles.
It will join Ricky and Mackenzie’s stars forever acting as reminders of paying it forward.