Mom Creates Epic Bucket List To Help Her 12-Year-Old With A Disability Live An Extraordinary Life

"It's a way to ... try and get this kid an extraordinary life, not just an ordinary one. She's here for a good time, not a long time."

On September 7, 2017, Charley Hooper turned 12 years old. It wasn't an ordinary birthday, because she isn't an ordinary girl. In fact, none of Charley's birthdays have been "ordinary," not even her first one. When she was born in New Zealand, the midwife forgot to clear Charley's throat, causing her to go without oxygen and suffer brain damage called microcephaly

Due to this neurological condition, Charley's brain and head never developed past the newborn stage. Though her eyes can technically see, her brain damage means she can't process images effectively, causing Charley to be blind. She also can't move any part of her body by herself. "That has led her to become one the world's most disabled children," Charley's mother, Jenn Hooper, told A Plus. "... She's been through so many surgeries, I cannot remember ... I stopped counting at 18, and she was 2 years old." 



Yet despite all these challenges, each and every birthday is a time to celebrate and reflect on how much progress she and her family have made in accomplishing the items on her bucket list over the past year.  

Courtesy of Jenn Hooper 
Courtesy of Jenn Hooper 

Hooper and her husband Mark originally came up with the idea for a bucket list after Charley nearly died one night, needing to be resuscitated. "I said to my husband after we came really close to losing her, 'What are we gonna say at her funeral? If she did die now, what do we say?'" Hooper explained. "... So I came up with the bucket list. I thought, well, it's a way to make some memories, to try and get this kid an extraordinary life, not just an ordinary one. She's here for a good time, not a long time ... " 

To make the list, Hooper sat down and asked herself, "What would a little girl want?" Though the original intention was to complete the list by Charley's twelfth birthday, once Hooper started, she couldn't stop. Because Charley's condition is so rare, her parents don't know how long her life will last. That's what makes the bucket list so important, and so challenging. When Hooper set dates for the bucket list, she shoots for a year or two and sees what her family can get done in that time. 

Courtesy of Jenn Hooper 
Courtesy of Jenn Hooper 

But as long as Charley grows older, the list will grow with her.

For every item the family completes, such as getting custom-made diamond earrings, Hooper adds another, such as meeting Ed Sheeran. "A lot of the things on the list are crazy," she explained. "It's a bucket list. It's not a 'Things To Do On The Weekend' list." 

The Hoopers have already done "quite a few of them," and chronicle each one on a public "Charley's Bucket List" Facebook page, with the hope of educating and inspiring others. "It gets Charley out of the house and gives us a nice positive focus for our lives," Hooper said. "It [also] raises awareness that these kids don't just die. Because everywhere we go, it gives people an opportunity to see a kid like this and meet them and go, 'Wow, she's just amazing for even being alive every day.'" 

Courtesy of Jenn Hooper 
Courtesy of Jenn Hooper 

Charley and her bucket list have also provided Hooper with a springboard for public advocacy work to improve maternal care and accessibility for people with disabilities in New Zealand, where the family lives.

Through Action to Improve Maternity (AIM), Hooper has helped more than 750 families get legal help for their children with labor-induced disabilities, as well as improve the quality and safety of the New Zealand maternity system. "She's the catalyst for all of this," Hooper said, referencing Charley. "She's literally saving lives because of the work we do with AIM." 

Over the years, Hooper's made a name for herself as "New Zealand's Erin Brockovitch," but her work is far from done. Currently, she's also working on building New Zealand's first truly accessible disability toilet in a public place "that would fulfill every need of a disabled person," including an adult-sized, height-adjustable change table with a shower underneath it. "I distinctly didn't want it in somewhere like a hospital because that would send the message that disabled people are only ever sick," she explained, though she couldn't reveal the exact planned location just yet. 

Hooper has even begun to form a new charity to help build as many of these bathrooms as possible, however, she's eventually hoping to find an organization willing to take over the cause for her because, with three kids (Charley has two younger brothers) and all the advocacy work she does with AIM, her plate is already overflowing. "There's no end, no end of crazy that happens in this house," she joked. 

Courtesy of Jenn Hooper 
Courtesy of Jenn Hooper 


But no matter how long the crazy lasts, it's all worth it.

"For me, there is a huge element of making the tragedy that could've remained with Charley ... into something as positive as I can," Hooper said. "We try to give her the best life that we can while she's here with us and make memories for her brothers and us ... and we try to help as many others as we can that are already here." 

Though there are days when Hooper feels disheartened by Charley's situation, she never tries to sugarcoat her feelings. Though she loves Charley, Hooper doesn't always feel like her mom. She's frank with her feelings because she wants other parents of children with disabilities to know that it's OK. "You can't help how you feel, but you can help what you do about it," she said. "I beat myself up for a long time that I don't love her like I love my boys ... It took me a long time to accept that's how it might be ... I tried for a long time, and then I gave up trying and just [realized], 'You know what, I'm just gonna be the best that I can for her, and that's just gonna have to be enough.'" 

Courtesy of Jenn Hooper 
Courtesy of Jenn Hooper 

While the limitations of her relationship with her daughter can be difficult for Hooper to reconcile, it doesn't make her any less determined to give Charley her best possible life.

"At the end of the day, it's a real feel-good story," she said. "I've always said that for a kid that can't see, can't move, and doesn't know who I am, she is changing more lives than anyone that I know." 

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