Skylar's Disney World Wish
When Gabriella Porchia was pregnant with her first child, she expected diaper changes, midnight feedings, teething—all the typical struggles that come along with having a newborn baby. But just three months after her son Skylar was born, the family found themselves facing a much more difficult challenge.
Skylar was eventually diagnosed with tuberous sclerosis complex (TSC), a genetic disorder that causes tumors to grow in the major organs of the body. Although benign, the tumors in Skylar’s brain have hampered his development significantly. Starting around three months of age, he was having over 100 seizures a day.
That affected him a lot with his development. He didn’t crawl until he was almost two. He walked on his own when he was about three-and-a-half.
-wish mom, Gabriella
Skylar is also non-verbal, but communicates in other ways, such as bringing his shoes to his mom when he wants to go somewhere. And although this sweet, loving child enjoys many of the same things as his peers, none of these successes have come easily.
Fighting For Skylar
Right from the beginning, Gabriella has been an advocate for her son. “When he had the first seizure, the first doctor that we went to told me it was behavioral, not a seizure. Later, they told me, ‘He won’t be able to walk.’ I had to fight a lot to get what I needed for him.”
Fortunately, however, Gabriella disagreed.
“We didn’t just believe what the doctors told us,” she remembers. “We pushed and we pushed and we pushed.” She advocated for a new medication that didn’t cause Skylar to sleep for hours during the day. She fought for access to the equipment needed to strengthen Skylar’s muscles.
Finally, with the help of leg braces and a walker the family paid for out-of-pocket, Skylar took his first steps at age three. “He definitely surpassed everything that they said about him,” Gabriella says. “When you look at him now, you would never know that he couldn’t walk before. He runs now. He skips!”
She is still fighting, trying to get the care he needs. This is likely to be a continued battle, but Skylar is an amazing warrior and has a team of people ready to fight for him.
“We are a family that advocates, we are a family that stands strong behind our son,” says Gabriella. “Skylar has taught me so much resilience and strength. He’s been through so much and he’s just so strong.”
Skylar’s Disney Wish!
Due to the communication barrier, Gabriella was very hesitant about selecting Skylar’s wish. But despite his inability to speak, Skylar is surprisingly open about his likes and dislikes. He loves to watch Disney movies as well as going on rides at carnivals and other theme parks. It was a family outing to Disney On Ice that sealed the deal.
“He was just screaming, clapping, twirling around in circles,” recalls Gabriella. “We were so happy to see how happy he was. But I said, ‘He is going to love Disney!’”
In December of 2023, Skylar, his parents, his grandmother, and his two younger siblings got to go on their first trip to Disney World!
All of them at Give Kids the World Village, a resort dedicated solely to families with special needs children. For the Porchias, being surrounded by people with similar struggles made the entire trip that much easier.
“That trip was the best trip of our lives. You don’t feel like people are staring. We had no worries in the world. I’ve never felt so comfortable in my life.”
During their week in Orlando, the family spent three days in the theme parks, riding roller coasters, meeting some of the kids’ favorite Disney characters, and attending Mickey’s Very Merry Christmas Party.
“The whole experience was amazing,” says Gabriella. “Every time I talk about it, I cry.”
Bringing Families Together
When a child is coping with the effects of a critical illness, it often takes a toll on the entire family. “There was a time in our lives when we couldn’t do anything,” Gabriella recalls. “Going through all of this as a family is hard. His siblings experience this, too.”
By granting wishes to children like Skylar, Make-A-Wish is able to shine a light into the lives of an entire family.
“Skylar didn’t ask to be born with this, so all we can do is give him the best life we can,” says Gabriella. “To hear him scream and smile and laugh meant so much to us. We were just a family having a good time. It was perfect.”
The Porchias have a long road ahead of them as they manage Skylar’s condition. But thanks to Make-A-Wish Central and Northern Florida™, they’ll always have memories of their Disney trip to look back on.
Skylar’s wish has been granted, but there are still hundreds of children waiting for their wishes to come true. If you’d like to support Make-A-Wish in our goal of granting wishes to every eligible child, please consider donating, volunteering, or attending an event near you.