Like any other kid, Izabella Adams loved her family’s trip to Walt Disney World in Florida.
“I like roller coasters,” said the 6-year-old Pine Township girl, who goes by “Bella.”
But unlike other kids, Bella lives with rare medical conditions – Lennox-Gastaut syndrome, which is a form of epilepsy; and metachromatic leukodystrophy, a recessive genetic disorder.
Bella was OK at birth and hit the expected milestones, then had a seizure at 2½. Treatment included a medically-induced coma.
She was diagnosed at age 5 after many tests, appointments and hospital stays, and she also has an intellectual disability.
“She does have a lot of seizures... Our biggest hurdle is the epilepsy,” said her mother, Michelle Adams.
Despite the time and energy that goes into caring for Bella, the Make-A-Wish trip was a wonderful experience for the family.
Parents Adams and Solan Freed hit the road in February with Bella and her siblings, Christian, 5, and Josephine, 2.
The family drove to Florida instead of flying because Adams knew that would make it easier to care for Bella and her seizures, which she experiences every day.
Bella, who is in first grade and attends a special-needs class at Hillview Elementary School, had a blast in Florida, a trip made possible by Make-A-Wish Greater Pennsylvania and West Virginia.
The nonprofit provides wishes for kids aged 2½ to 18 who are living with critical illnesses.
“I’m very thankful for all that they do,” Adams said.
The organization paid for everything, including the villa where the family stayed at Give Kids the World, a resort-type village in Kissimmee that partners with Disney World and accommodates children with serious illnesses and their families.
“They were excited,” Adams said of the kids.
She was also excited, having a chance to take a break from their busy lives that include doctors’ appointments and visits to hospitals in Pittsburgh and Philadelphia.
“It’s been a rough year,” she said.
Give Kids the World has a carousel, train, arcade, visits with Disney characters, holiday-themed activities, a talent show, and a pool, where Bella practiced swimming.
“And they gave gifts every day,” Adams said of the games, toys and snacks that the kids received.
Bella wore a special button during the trip, which gave the family privileges like moving ahead in line.
She loved meeting the characters and getting their autographs, though she did have a seizure while spending time with Daisy Duck.
“Daisy just held her,” Adams said.
All of the staff members were great, and they met other Make-A-Wish families.
Bella also had fun on the rides, having a meal with Disney princesses, and taking in the “Frozen” attractions. The trip ended with a visit to Daytona Beach – the first time the kids saw the ocean.
The family’s living and dining rooms are decorated with memories of the trip.
Adams created a “Minnie Mouse” wall for Bella, and another area is covered in cards, letters and drawings from students at Strong Vincent School in Erie.
Make-A-Wish volunteers visited the home before the trip to throw Bella a party, bringing the cards with them.
“I thought that was really sweet,” Adams said.
Some of the cards and letters count down the days until the trip, and others wish Bella a fun visit to Disney World.
“I hope you have the best time of your life,” wrote a boy named Anthony.
Next for Bella is surgery that is designed to reduce seizures and the amount of medication she takes, and more genetic testing. Figuring out MLD is like trying to put together a puzzle, Adams said.
Most kids with the disease regress quickly, relying on wheelchairs and other mobility devices. Bella is very active with cheer and dance groups.
“She doesn’t fit the clinical,” Adams said.
Bella also likes going to school, playing at home, reading, Peppa Pig, Doc McStuffins, macaroni and cheese, and popcorn.
“She likes to learn,” Adams said.
For more information about Make-A-Wish Greater Pennsylvania and West Virginia, visit greaterpawv.wish.org or call 800-676-9474.