# @wmar2news on Instagram

- **Type:** Video
- **Original URL:** https://www.instagram.com/p/CxGjIXCuKX4
- **Gondola URL:** https://gondola.cc/posts/8576792-wmar2news-instagram
- **Thumbnail:** https://img.gondola.cc/tr:w-,h-,fo-auto/thumbnails/fe527f2fa3.jpg
- **Posted:** 2023-09-12T18:48:49.000+00:00
- **Account Owner:** WMAR-2 News (@WMAR2News) — https://gondola.cc/WMAR2News

## Caption

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, lailasgift_nonprofit 

“Our mission is to advocate for support, and celebrate children with special needs and disabilities,” Shari said.

Click the link in our bio to read more 

#specialneeds #specialneedsmom #raredisease #nonprofit #awareness #inclusion 

kellyswoope

## Stats

- **Views:** 118
- **Likes:** 233
- **Shares:** 0
- **Comments:** 8

## Tags

inclusion, awareness, specialneeds, specialneedsmom, raredisease, nonprofit

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