‘An Amazing Little Human’ Life with a terminally ill family member
By Quanecia Fraser-
Tarleton State University student, Callie Ann Petree, says her terminally ill sister is her “role model.”
Petree, a freshman social work major with a minor in counseling, says her 12-year-old sister, Ava, suffers from scoliosis and has “been special needs her whole life.” She has been receiving treatment from childrens orthopedic doctors ever since she was young, but only recently they discovered further health issues.
Petree’s family did not know what special needs disorder Ava had until last year. In the summer of 2018, Ava got an MRI when she was getting her scoliosis braces re-fitted by her scoliosis doctors. Examiners found that parts of Ava’s brain seemed to be missing.
“We were just going to look for a new back brace, so we weren’t really expecting that,” said Petree.
Ava was diagnosed with leukodystrophy. According to the National Organization for Rare Disorders, “Leukodystrophies are a group of rare, progressive, metabolic, genetic diseases that affect the brain, spinal cord and often the peripheral nerves.”
“Only 71 people have ever been diagnosed with the type of dystrophy that (Ava) has,” said Petree.
Petree explained that people suffering from leukodystrophy usually die from a variety of causes including choking and seizures, due to the brain not functioning properly.
Petree adds, “Her brain is just slowly disappearing until something happens to where she dies. We don’t know if it’ll be tomorrow, we don’t know if it’ll be two years from now. She is deteriorating pretty fast.”
Petree learned of her sister’s diagnosis just a few weeks before she started school at Tarleton.
“My parents told me and my brother who’s 17. It was awful,” said Petree.
Currently, Ava is “fully functioning… but processes things more like a 7-year-old than a 12-year-old,” according to Petree.
Walking has been getting more difficult for Ava. In November, she fell and broke her wrist. Petree said it’s difficult to watch her younger sister suffer.
“Every time I go home, I see that she’s a little worse, and that’s really hard for me because I know my family doesn’t see it because they’re with her every day.”
Ava is in the seventh grade. Petree says her family was nervous about Ava starting middle school and getting bullied.
“Ava has a different maturity level,” said Petree. “But her classmates have embraced her and protected her. Everyone is her best friend. I’ve taken her lunch at school, and everyone talks to Ava.”
Petree said Ava felt really special when she was invited to a Valentine’s dance by a boy in her grade, named Brady.
Brady and Ava became friends before Petree’s family learned of Ava’s diagnosis. The family first found out about Brady when Ava came home one day and told them “this boy asked me on a date. I’m going on a date!”
Petree said her family was afraid someone was playing a mean trick on Ava but eventually learned that their friendship was real.
“It was legit. (Brady’s) mom came and brought him to our house, picked her up and took her to the movies,” said Petree. “(Brady) brought her flowers, a teddy bear and chocolate.”
The friendship continued and in February, Brady asked Ava to their middle school’s Valentine’s dance. Petree, her mother and her friend, Taylyn Grim, a freshman nursing major at Tarleton, helped Ava get ready for the dance.
Petree’s mother “bought every dress” in Ava’s size. However, the dress Ava wanted to wear had straps that wouldn’t fit her properly because of her spine/scoliosis. The dance was less than an hour away and Petree says her mom didn’t want to tell Ava that she wouldn’t be able to wear the dress she wanted to wear. That was when Grim volunteered to sew and alter the straps for Ava.
Petree did Ava’s makeup for the dance. “It was just me and her in the bathroom when I was getting her ready,” said Petree. “It was really special because I never thought I would get that with Ava.”
Brady and Ava took pictures before the dance that Petree posted to her Twitter. In the pictures, Brady is wearing a blue shirt and gave Ava a corsage with blue ribbons. Blue is considered to be the leukodystrophy awareness color.
“She’s probably not going to make it to prom… so (Ava attending the Valentine’s dance) was super special to us,” Petree said.
Before Ava was diagnosed with leukodystrophy, Petree said she wanted Ava to be her maid of honor at her wedding one day. Petree said she took plenty of pictures of Ava before the Valentine’s dance because she wants a picture of Ava to stand next to her at the wedding.
“I’m going to use the (picture) from her Valentine’s,” said Petree. “That dance meant a lot to our family.”
As for Brady, Petree said the family is incredibly grateful for him.
“We never thought she’d get to go to a school dance,” she said. “We never thought she’d get to go on a date or a boy would make her feel special.”
Petree describes Ava as being truly one-of-a-kind, with a positive personality that impacts everyone around her.
When Ava found out about her diagnosis, her sister said she was excited. “She was like ‘So I get to meet Jesus sooner’?” Petree said.
But when Petree went home one weekend, Ava was very upset. Petree says Ava usually doesn’t get upset. When she asked Ava what was wrong, Ava said, “I have this disease and I’m going to die, and I don’t want to die. And I’m scared to die.”
That wasn’t easy for Petree to hear, especially as Ava’s older sister: “I want to be able to take that pain away… What do you say to that?”
However, Petree assured Ava, “You’re so lucky. You get to go be with who created you, you get to go and chill with Jesus. I know he’s so excited to see you again.” Petree said Ava quickly responded, “You’re right, I get to go!”
Petree says that Ava’s impact on others is profound.
“Ava has been able to touch so many people throughout her whole life. She is just a bundle of joy. No one can meet Ava and be the same after,” said Petree, “I think Ava in 12 years has probably changed more people’s lives than some people do throughout their whole life.”
Grim agrees with Petree. She even says that Ava strengthened her faith in God.
“When she hugs you, it’s like a surge of warmth and happiness that is completely, so pure,” Grim said. “When I think of happiness and pure goodness, it’s Ava. She’s definitely a light in a very, very dark tunnel.”
While Ava’s condition is worsening, Petree said her family tries not to focus on that. Instead, they try to focus on the love they have for Ava.
“Our family really wants people to know that this is supposed to be dark and sad and depressing, but it’s not… because we have God,” said Petree. “We want people to know that we are not hopeless. We believe there’s purpose in (Ava’s situation).”
Petree recently created a GoFundMe to buy a service dog for Ava. The link to that GoFundMe can be found here: https://bit.ly/2FoBUe6