Skylar on TV

They did a really great job last night with the story. Skylar was so happy watching herself. It means a lot to have her story shared and viewed by so many. It was even show in Fayetteville this morning. I just feel like I have a great purpose with Skylar's diagnosis and my goal is to raise money and help fund research so that parents do not have to bury their child at a young age because of a disability that nobody is doing research on. When you don't hear about a disability or don't know anything about it it means that research is typically not being done on it. You hear about Autism and Down Syndrome because more children are diagnosed with it and it's important to know what caused them and ways to prevent it but when my child is born with a diagnosis and the things that you read about it is that it's a catastrophic diagnosis your heart stops. She wasn't expected to live to be 8 so she has beaten a lot of odds but if I could do anything to prevent another child having her diagnosis I'd walk on fire to do it. It's so unfair to have a any child go through the things that they do and my goal is reduce the number of children affected by any disability especially the ones you never hear about. Skylar might not be able to tell her story but that's my job as her mom and to ensure that her life was lived to the fullest. Her story is far from over and 20 years from now I have a feeling we will still be hearing about Skylar and giving her credit for what she left behind and what she started!

Here it is if you missed it.

http://www.clipsyndicate.com/video/play/5054042/skylar_s_bucket_list

http://www.arkansasmatters.com/story/d/story/family-raises-awareness-with-bucket-list-for-termi/40221/GcsEmLgR2kGTsGZgvUwdHw

BRYANT, AR--An Arkansas girl is living out her life's dreams while she can, marking off items on her bucket list.

It may sound unusual for an 8-year-old to have a bucket list, but when doctors placed Skylar Stone on hospice care a few months ago her mother, Lindsey, started making a list of things most parents want to see their children do. The list includes going to a sleepover and graduating from high school. Now they're crossing off as many items as she can not knowing how much time they have left.

In dance class, with her volunteer buddy right behind her, Skylar can glide across the dance floor with the other kids with ease, even though she suffers from Schizencephaly.

"She's got a little a less than half a brain altogether. You look at an MRI and it's all black, no brain tissue just fluid," her mother explains.

Her condition makes some other typical activities, like going to a sleepover, nearly impossible.

"There is no way I can have her be invited and say are the 13 medicines she takes at night, here is her pulse machine, here is oxygen if she needs it, it's a big responsibility," says Lindsey Stone.

So her mother made sure to put it on Skylar's bucket list, a list she created to help her cope with Skylar's prognosis.

"When they put her in hospice it was a pretty big shock. I knew she was regressing but I didn't think we were at his point," she says.

So Stone started writing and they got to work. One of her first achievements was attending a slumber party.

"They did nails and danced and sang. She stayed up longer than anybody," says Stone.

Every night for the past two weeks, the pair have been busy making memories. Skylar has gone camping, gotten a manicure and met a few celebrities.

They even allowed KARK to join them on Skylar's quest to capture at least a thousand hugs and smiles.

"She has the best laugh you have ever heard she makes you laugh with her," says Stone.

They hope with each photo and memory, people learn more about Schizencephaly and Skylar.

"At least I can give her a legacy she deserves when she is not here," she says.

The family is also hoping to raise awareness with an awareness walk. They're hosting an event titled "Superhero Walk for Awareness, featuring Super Skylar" May 10th in Bishop Park in Bryant from 10 a.m to 2 p.m. To learn more about the event and keep up with Skylar, click here.