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Chester County girl born with rare condition gifted epic new playground
Three years after FOX 29 shared the story of little London Kelly who was born with Cerebrocostomandibular Syndrome, FOX 29's Kelly Rule has a heartwarming update including a look at the family's brand-new swing set fully donated through the Make-A-Wish Foundation.
OXFORD, Pa. - Family time outside is a given for so many of us, but for Kristy Thompson and her daughters, 6-year-old Charlie and 4-year-old London, it’s a gift and a milestone.
"Normally they would be running together, playing bikes together, fist fighting each other as sisters do, things like that, and they can’t do those things," she said. "It’s just our life looks different."
On Wednesday, the family tried their brand-new swing set outside of their Oxford home for the first time.
It was fully donated through the Make-A-Wish Foundation.
Volunteer wish granters and mother-daughter duo, Maddy Gilligan and Joanne Everhart, came with surprises for the family.
"It’s amazing, it’s also something that can continue to be part of her life as she grows older," said Gilligan.
FOX 29 shared London’s story three years ago.
Defying the odds: Chester County girl born without rib cage may soon be able to go home
For nearly a year, London Kelly has defied the odds. After a rare condition left her without a ribcage, her mother has fought to get her the care she needs, in hopes of finally bringing her home.
London has Cerebrocostomandibular Syndrome, known as CCMS. An x-ray from her birth showed that she did not have a rib cage—though her mom says she has a rib forming now.
Her doctor at Children’s Hospital of Philadelphia told FOX 29 there have only been about 80 or 90 cases described ever in medical literature and only three of those cases were similar to London. In those three cases, the patients died shortly after birth.
London has a feeding tube and needs to be on a ventilator at all times—but even that could change.
Her mom say she can pull herself up on her knees and is showing signs that she could walk in the future, and they are discussing plans for school when she turns five-years-old.
"Her pulmonologist is talking about her lungs being in such a good place she will be off the ventilator one day," said Thompson. "It’s a joy, she does new things, things we didn’t think she would do."
Thompson sees so many benefits to their new outdoor space.
"We’re in this medical room 24 hours a day, 7 days a week, so it gives us that outlet for our mental health," she said. "It normalizes and it teaches the kids in the neighborhood, that, ‘Hey she can play too.’"
A nurse cares for London for some hours during the week, but Thompson is mostly a full-time caretaker to London, a mom to two other children, a nursing student, and constantly connecting with other parents and spreading awareness.
She’s a forever fighter for London’s future—which looks brighter and more promising every single day.
"I have a very strong support team and I pray, I lean on God," she said. "Even though London isn’t vocal she makes a very big statement of giving other kids and parents hope in continuing to advocate and not give up and to make sure you do everything that you can."