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GoFundMe for terminally ill child

A local mother needs help with funeral expenses for her daughter. The little girl could pass away at any moment, her mother says she's already showing signs of a fast paced decline.

Posted: Oct 17, 2021 10:23 PM
Updated: Oct 19, 2021 11:24 AM

LAFAYETTE, La. - Whether it's a power outage, natural disaster or a shortage of some sort. Whatever the case may be Louisiana residents are known for coming together and helping one another out. I'm going to tell you about one Louisiana resident who could also use our help.

January 2019, that's when Shantre Scott found out she was a having a daughter.

"As soon as they put that epidural in she was like i'm ready to come, it's over," said Scott.

Already a mother to two older boys Shantre says having a baby girl brought her joy and a lot of excitment.

"I get to play dress up with her, she's like my little doll," said Scott.

About six months into Ava's tiny life Shantre started to notice some unfamiliar things in Ava's behavior.

"My daughter has a genetic disorder that effects her brain," said Scott.

Ava has PEBAT disorder, it's a severe and terminal neurodevelopmental disorder that happens soon after birth or infancy. Over time Ava's brain has slowed down resulting in sometimes poor or absent speech and trouble walking.

PEBAT is a gene mutation carried by both parents in which the child has a 25% chance of getting the disorder. Ava is one out 100 children to get PEBAT.

"There's no cure, there's no medication, no gene therapy, she's currently on hospice," said Scott.

Shantre says Ava has seen every neurologist, pediatrician, cardiologist, pulmonologist, therapist and geneticist she can think of. She adds that the hardest thing is realizing that her daughter will not see her third birthday.

Due to Ava's rapid decline Shantre is making arrangements. Arrangements to celebrate her daughters short but beautiful life. The problem is, she doesn't have the funds to do it. With the help of family and friends like Adrienne Malveaux, Shantre has set up a gofundme. Right now she has raised $1,200 of $8,000.

"We were co-workers at Viemed and I took her in under my wing as a little sister. The litte sister i never had," said Malveaux.

Adrienne Malveaux took to Shantre's situation because they have similar backgrounds. Both women have been single mothers at one point in time and Adrienne has a grandchild ava's age, two.

"If she needs me to go somewhere with her, anything. She needs a babysitter, she needs to get away, I'm here," said Malveaux.

I said "what has your relationship become with ava?"

"oh that's my baby," said Malveaux.

I said "since you all have essentially become family what does it mean for you to be here for her to possibly be able to help out with what's going on?"

"It means everything, like I said as a mom and a grandmother I would never want to have to go through this," said Malveaux.

"Part of me has been in complete denial about her disgnoses. Just having the money to plan something for her if something were to happen tomorrow or nex week I can't do it. I feel like my daughter deserves that so I want to give her the celebration of life she would deserve," said Scott. 

If you would like to donate to Ava's funeral expenses you may click the link the below.

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