BALTIMORE — It's play time for Lana and her sister Laila. The twins, just turned nine, but when they were born their parents were told it was likely Laila wouldn't live past the age of two.
"I literally gave birth and never saw Laila for hours because they realized that she could not breathe and they had to immediately, hooked her to oxygen tank," Shari Bailey, Laila's Gift founder, said.
It took doctors months to diagnose Laila, she's one of the first cases of Jacobsen's Syndrome they've ever seen at Johns Hopkins.
It's a defect in her 11th chromosome. And for Shari, the doctor's view of Laila's future was grim.
"We don't know what you're dealing with. She may learn to brush her teeth. She may learn to walk. She may learn to feed on her own, only time will tell," Shari said.
Now, Laila is walking. She's still non-verbal but she and her twin have found a way to connect and communicate.
During the pandemic, Lana went to her mom and said she wanted to create an imagination book.
"And she said I will write the stories and children draw the pictures. That was the start of zigglebee," Shari said.
"Ziggle means cool, so it's like cool bee," Lana said.
Then, Laila decided she wanted in on the action.
"Laila grabbed a crayon and started like drawing and what appeared to be a drawing on the paper and that was the first time Lana had seen something like that out of Laila. She was very emotional about it, she was super excited about it," Shari said.
Zigglebee was the writing on the wall for the family's nonprofit, Laila's Gift.
"Our mission is to advocate for support, and celebrate children with special needs and disabilities," Shari said.
"I'm not the only parent on this Earth that doesn't know if their child will make it to the next year to see their next birthday,"Shari added.
Laila's Gift makes dreams come true for families of special needs children. They provide free birthday parties and milestone celebrations at the Port Discovery Museum.
"From doctor's appointments, to juggling schedules, they're doing a bunch of things all day long. Planning a birthday part is really low on the priority list, although you want to make it special, so we take that away from the parents and we help them to make that happen," Shari explained.
And by helping to provide this special time, Laila's Gift helps these kids be just that.
"What Laila's Gift does is to help children feel connected and feel like they have friendships, if only for a day," Shari said.
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