Samantha lives with tuberous sclerosis, a rare genetic disorder that causes tumors to form in within her organs.
The onset was very sudden–Samantha was a happy and healthy baby until suddenly, at 9 months old, she developed a severe fever and began seizing continuously.
She was airlifted to a hospital for treatment, where doctors spent over a year searching for answers before finally reaching a diagnosis. As a result of her condition, Samantha had developed several brain tumors, which were causing the seizures.
The tumors also contributed to some emotional and developmental delays. “She has severe anxiety and really bad impulse control” explains her mother, Kirsti. “She has a hard time reading social situations and responding appropriately.”
Despite the challenges she faces every day, Samantha is an incredibly thoughtful and kind person. “She’s very empathetic,” says Kirsti. “She’s really not interested in what anybody looks like on the outside. She really honestly and truly judges people by their personality and what they look on the inside.” Samantha loves watching TikTok videos, singing karaoke, creating art, and acting in school plays.
Samantha’s health is monitored closely by doctors, watching for more tumors, which could develop with no warning. “You never really know what you’re up against,” says Kirsti, “because it could change next week.”
When Samantha’s family relocated to Northern California, they joined a support group for families with tuberous sclerosis. Through the group, they met a child who had recently had their wish granted–and learned that Samantha, too, qualified for a wish.
Kirsti says that Samantha crucially needed something to look forward to. “Anytime she would feel down, we’d reminder her,” she says, “yes–you have to take your seizure medicine tonight, but guess what? We also get to go on a Disney Cruise!”
On the cruise, Samantha received VIP treatment everywhere she went, with lots of passengers noticing her Make-A-Wish gear. “Everywhere we went, people kept looking at her,” says Kirsti, “but not like there was something wrong with her. They were looking at her in a much more empathetic light.”
Samantha was treated to little surprises every day, from the limo ride to the airport, to chocolate covered strawberries left in her room, bike riding and snorkeling excursions, and special gifts--like her brand-new Mickey Mouse sneakers!
“We got to do something as a family that wasn’t centered around all of the negative parts of her diagnosis,” says Kirsti. “Her diagnosis actually got to give us something amazing.”
Today, Samantha’s health is stable. She’s doing well in school, and she’s thriving socially. Her wish has given her plenty to talk about and she loves sharing photos from the trip.
“It was really nice to see something good come out of a horrible situation,” says Kirsti. “To not have to tell her no, to not have to put limitations on what we could do–to just let her be that really special reason for this wonderful family memory.”
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