I wish to go to Key West!
Addilyn
6
nervous system disorder
Addilyn's Key West Wish
"I wish to go to Key West!"
For Justine, it’s very normal to see her daughters—8-year-old Ella and 6-year-old Addilyn—snuggling on the couch while watching their favorite show. And while this scene probably feels very familiar to moms all over the world, the Smith household is a little different.
That’s because Addilyn (or Addie, as her family calls her) has been termed “medically complex.”
In addition to being autistic and completely non-verbal, Addie has intractable, or drug-resistant, epilepsy. She is also developmentally delayed, with her cognitive ability locked at 10 months of age.
Yet despite her struggles, Justine sees the light within. “Addie is always sweet and happy. She gives really pretty smiles.”
Making Life Better!
When Addie was born, there was no indication of the medical struggles that awaited her. “She was born a perfectly healthy, full-term baby,” says Justine. But as time went on, Addie failed to meet certain milestones, such as sitting unassisted.
Then, at 7 months old, Addie became sick with the flu. In addition to lethargy and fever, her parents noticed another troubling symptom: seizures. Just a few months later, an EEG confirmed a diagnosis of a rare form of epilepsy.
While Addie’s medical team raced to find a combination of medicines that worked, her seizures started becoming more severe. At one point, Addie was having up to 30 seizures a day. “We couldn’t get the seizures to stop,” Justine says. “And medication wasn’t helping.”
Doctors explained the situation to Addie’s family. “Her brain wasn’t working and it needed to be reset like a computer.” Addie was put into a coma for two days.
“It was probably the darkest days of our life. We were in the hospital for a month with her.”
Today, Addie still has some seizures. “The goal is quality of life,” says Justine. “This is the year we’re making our lives better.”
This year, Addie has been receiving at-home nursing care, physical therapy, speech therapy, and occupational therapy, all in an effort to improve her quality of life.
“I wanted to make our lives less sad,” Justine shares. “I wanted to see if we qualified for Make-A-Wish because we missed so many opportunities to do things together as a family because of her instability.”
So when the word came that Addie’s wish would be granted, the family chose to do something they hadn’t been able to do for a long time: go on a tropical vacation to Key West!
Making Memories
During their time in Key West, Addie and her family got to do many of the same things that most families do on vacation. They visited The Turtle Hospital and the Key West Aquarium, fed tarpons, went on a photo scavenger hunt, and went on a beautiful sunset cruise.
In their downtime, the girls loved spending time in the pool. In fact, they had breakfast there every morning!
“We were able to do things as a family and not be separated,” says Justine. “This afforded us a lot more quality time together so we could make some better memories.”
Although Addie and her family are immersed in their normal routine, the memories of their Wish trip are still strong and they still talk about the experiences they had.
But for this family, the trip was about so much more than sightseeing.
I have to worry about so much—doctor’s appointments, medication refills, schedules, different things with her—that not having to worry about planning everything and just showing up and
-wish mom, Justine
Spreading Joy
For families like Addie’s, having a wish granted not only acts as a much-needed break from the challenges of daily life, it can also serve as a bonding experience.
Addie’s family still talks about the incredible memories they made during their trip and they look forward to sharing more time together in the future.
Every year, Make-A-Wish grants wishes for families just like Addie’s and we rely on the support of donors, volunteers, and sponsors just like you. If you’re interested in making a difference in the life of a critically ill child, get connected with Make-A-Wish of Central and Northern Florida today.
