ATLANTA (CBS ATLANTA) -
A family in metro Atlanta knows the pain of the Texas parents who created Avery's bucket list for their dying infant. They too had a daughter with Spinal Muscular Atrophy.
The Jones family also wants to raise awareness of the cruel genetic disorder.
For the first month of her life, Skylar Jones was a healthy baby. But then her parents, Ashley and Kyle Jones, realized something was wrong.
"She was barely moving her legs at all. Then her right arm came up as chicken wing and was crimped there. We called her little Nemo," said Ashley Jones.
Doctors diagnosed Skylar with SMA.
"I couldn't eat for days. I had no idea something so horrific existed. I learned my daughter was going to lose her life slowly and all her muscles were going to deteriorate and her mind was going to stay completely normal," said Ashley Jones.
CBS Atlanta News first met Skylar last spring when she was 1 1/2 years old. She could no longer move, except for her eyes, which were full of life.
Skylar soon needed a breathing machine all of the time. Late last summer, at 21 months old, she passed away.
"My husband and I were able to be there with her as she took her last breath," said Ashley Jones.
Ashley Jones got a tattoo on her forearm in memory of Skylar.
"With every person that asks, that's one more person who knows about it," she said.
Shortly after Skylar died, the Jones family held a fundraiser where they painted to help others fight SMA. Now, a painting of Skylar hangs in what was her bedroom looking over her parents.
"It's not just Avery and not just Skylar, there is a whole community," said Ashley Jones.
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