LINCOLN, R.I. (WPRI) ─ A Lincoln family has been quarantined since the beginning of the coronavirus pandemic to keep its younger member, who was diagnosed with a rare condition, out of harm’s way.
Skyla Silva’s mother, Samantha Guadagni, tells Eyewitness News that last spring, her daughter came down with the flu and then began having seizures. After months at Hasbro Children’s Hospital, she was diagnosed with Nonketotic Hyperglycinemia (NKH).
“Her body doesn’t process glycine like a normal person would,” Samantha explained. “So it builds up and stores in her blood and her brain, which causes seizures, learning disabilities.”
Samantha said it has taken months to manage her daughter’s disease, which has left her non-verbal. She said doctors don’t know how long Skyla will be able to fight the rare condition.
“You almost kind of have it in your head that it could happen at any time, just because of the condition,” Samantha explained. “Not like a normal parent would just be concerned about her kid getting a license and getting in a car accident, or running out in the street and getting hit by a car. Anything can do it to her.”
Skyla is considered high-risk for COVID-19, so her mom, dad and two older siblings have remained inside their home in Lincoln to protect her.
Thankfully, the Make-A-Wish Foundation has helped rid some of their cabin fever by granting Skyla’s wish and donating a swingset to the family.
Michael Vieira, the regional director for Make-A-Wish Massachusetts and Rhode Island, said 70% of wishes are typically travel-related, but with the coronavirus putting many of those trips on hold, coordinators have been working hard to ensure wishes still come true.
“Our mission hasn’t changed, but the times that we live in have,” Vieira explained. “We have many wishes that are able to move forward. Children like Skyla that wish for playsets. Children that wish for a gaming computer or a puppy, things that, I think, mean even more in our current time, as they’re all about transforming a home and adding something to a child’s daily life.”
Samantha said one of the best parts of Skyla’s wish being granted is that she can share it with the entire family.
“Now they [the siblings] can come outside and they aren’t just running back and forth in a yard, they have something to play with… something that they’ll love to use for a long time,” Samantha said.