Sylvi, 10, was born with a rare glycogen storage disease that’s kept her on a regimented schedule her entire life.
“She needs a continuous supply of glucose every three hours for her body to function, including at night when she sleeps,” said Sylvi’s mom, Blair. “The best way to describe it is that her liver is like a pantry full of food but she doesn’t have the key to access it, and missing a single dose of her medicine can lead to seizures or even a coma.”
With countless treatments and doctor appointments for her GSD1B plus other immune issues, it can be easy for Sylvi to feel trapped.
However, one thing that always brings Sylvi a feeling of peace is the idea of escaping into the wilderness where she can be free.
“I love animals and watching shows about nature,” said Sylvi, who was referred for a wish by a nurse in her GI office. “I was watching a show about treehouses when I saw one that was so cool and I decided I had to go there someday.”
This enchanted place, connected by swinging bridges, and including a kitchen, bedrooms and a deck overlooking the ocean on the island of Georgetown, Maine, was no ordinary treehouse. It was somewhere Sylvi could imagine and dream about during tough times.
“When it was determined that Sylvi would have a wish, she wished to visit the treehouse and our wish granters were amazing and worked to make that happen,” said Blair. “Sylvi had a ‘wishlist’ of other things she wanted to do in Maine like seeing different animals, and Make-A-Wish was able to really customize her wish to her requests.”
“Maine has the ocean and lots of big trees. It’s so different from Arizona so I’ve always wanted to go there,” said Sylvi. “I was so excited when I found out my wish was coming true because I would get to go there and stay in the treehouse!”
Because of Sylvi’s wide range of requests, Make-A-Wish split her time between the treehouse and a nearby lake house, where they enjoyed fishing, going to a zip-line course and visiting a wildlife rehabilitation park.
“We saw geese, bobcats and an albino racoon. Sylvi even fed a bottle to a rescued baby moose,” said Blair.
“Sylvi has a friend from treatment with the same disease, and we also met up with her family to spend a day at the lake. It was our first time together in person without doctors and being able to do something fun.”
But nothing compared to seeing the treehouse for the first time.
“We drove up a windy road and the treehouse was like something out of a fantasy; something you could never imagine in your wildest dreams,” Blair said.
“It was so pretty, fun and beautiful, like a fancy hotel,” said Sylvi, who stayed in the treehouse for two nights. “I loved going in the hot tub and looking out to the ocean.”
Since returning home from her wish trip, Blair has noticed some big changes in her daughter.
“Parents of kids wouldn’t think you’d come back from a trip feeling more refreshed, but Sylvi’s wish has really changed her,” she continued. “We try to go outside a lot as a family and this week without treatments, doctors, just being normal and enjoying life was an incredible adventure and a break for all of us.”
While the anxiety and trauma of doctors accessing her port has always been a huge source of stress for Sylvi, she now uses the memories of her treehouse as a peaceful place to think about during treatment.
“The last time Sylvi was hospitalized she was much calmer,” said Blair. “I asked her what she was thinking about in that moment and she said, ‘I was imagining myself in the treehouse.’ I think this whole experience really has helped her with her treatment, the treehouse has become a kind of sanctuary for her and it speaks to the power of a wish.”
Sylvi, who was homebound for a part of last year, is now in the 4th grade and excited that she’s able to attend school more regularly. Her mom hopes she can continue to tell her story and share the many benefits a wish experience has had on her daughter.
“Seeing what a wish does for a child, how could you not want to be involved?” Blair continued. “There is no cure for Sylvi’s condition, but her wish gave her a chance to be normal and get outside of her very medicalized world. It provided memories that she still revisits when things are hard and that will stay with her forever.”