How the Southmoore basketball program's Rett syndrome awareness...

How the Southmoore basketball program's Rett syndrome awareness fundraiser got started

by Jenni Carlson Modified: January 10, 2015 at 5:04 pm • Published: January 10, 2015
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Seated from left, Southmoore sophomore Rachel Hackney, 16, her father, Dj Hackney, and step mother, Kristina Hackney, sit with one-year-old twins Bennett Hackney, left, and Grayson Hackney, with Kara Hackney, 7, middle, at the Hackney family's home in Oklahoma City, Thursday, Jan. 8, 2015. Kristina Hackney is the mother of Kara, who has Rett Syndrome, and the twin boys. Southmoore will host its Go Purple basketball games to benefit Rett Syndrome on January 13. Photo by Nate Billings, The Oklahoman

MOORE — The basketball squads at Southmoore High School will be raising awareness and funds for a rare neurological disease next week.

It’s called Rett syndrome, and Tuesday night, Southmoore’s games against Edmond Santa Fe will be dubbed the Go Purple Games. Like pink and breast cancer, purple is the color of Rett awareness, and Southmoore will wear jerseys that are purple and white, not its customary navy and gold. Ribbons will be sold. Information will be distributed. Basketball will be still the focus, but Rett syndrome will be a close second.

“It’s a good cause,” Southmoore boys coach Wes Brown said, “and we’re real excited about being part of it.”
Thing is, no one on the current teams has a direct link to anyone who suffers from the disease. No player. No coach. No manager.

So, how did Southmoore hoops end up raising awareness for Rett syndrome, which occurs almost exclusively in girls and leads to severe impairments in everything from walking, talking, eating and even breathing?

The answer lies in Bartlesville, a freshman basketball team and the power of sports.

* * *
The year was 1982. Kids were listening to Michael Jackson’s “Thriller” album on their Walkmans, E.T. was phoning home and the Valley was the place to be, like, fer shur.

Brown was a just-graduated-from-college coach. He landed his first job in Bartlesville and had the daunting task of coaching freshmen.

Among his players was Darren Hackney.

The freshman was like most other adolescent boys. He had plenty of times when he was goofy and uncoordinated, but Hackney liked Brown and Brown liked Hackney.

Still, after the season was over, the coach and the player largely lost touch. Over the next 20-plus years, Brown’s career took him across Oklahoma. Sand Springs. Vinita. Then in 2008, he landed in Moore as the first boys basketball coach at the newly opened Southmoore.

One day, a familiar face walked up to him.

It was Hackney.

He was scruffier in the face and heavier in the midsection than in high school. (Aren’t we all?) His name had even changed; Darren was replaced by Dj. The two men caught up and reminisced about their Bartlesville days.

That was it. They would see each other around town occasionally, but there was no epic friendship forged, no “Tuesdays with Morrie” saga unfolding.

But a little over a year ago, Hackney’s daughter Rachel, a student at Southmoore, needed help with a project. She had asked several faculty for assistance, and while they didn’t shoot her down, she wasn’t getting far enough fast enough.

Hackney thought of Brown. The coach helped him through freshman basketball once upon a time. Maybe Brown could help again.

* * *

Rachel Hackney had a plan — she wanted to do a Rett syndrome awareness campaign in honor of her little sister.

Kara was diagnosed with the disorder right before her second birthday. The first signs of trouble came when she wasn’t trying to walk or stand or even crawl. Then, she started struggling to hold onto objects.

Doctors tested for almost a year before determining she had Rett.

The disorder is caused by a genetic mutation that stunts development. It’s not hereditary. It’s not caused by environmental factors. It is, as near as experts can tell, a complete and total stroke of bad luck.

Kara, now 7, is confined to a wheelchair. She can’t feed herself, can’t dress herself, can’t speak.
“She talks with her eyes,” her mom, Kristina, said, looking in the little girl’s sparkling brown eyes. “When you take the time to get to know how to communicate with her, you can tell.”

Rachel said, “She loves music.”

She knows that her little sister wants to sing and dance and do so many other things that girls her age love — but her body just won’t allow it.

So, two Octobers ago, Rachel decided she wanted to do something to help. She was watching a parade of pink during Breast Cancer Awareness Month, and she thought there should be something similar for Rett syndrome. She was part of the speech and debate club, and since it was looking to do a fundraiser, she proposed the idea of Rett awareness.

There was support, but Rachel didn’t feel like it was enough.

She told her dad that she was frustrated, that she wanted it to be big, that she wanted lots of people involved. She felt like Kara and all the other kids with Rett deserved as much as possible.

That’s when her dad thought of Brown; maybe the basketball team would want to get involved.

“I’d never heard of the disorder before,” Brown said of when Hackney first approached him with the idea, “but knowing him and meeting (Kara), it’s just something that needs to be addressed.
“If we can help a little bit, we’re more than happy to do it.”

The basketball teams joined forces with speech and debate, and last season, the inaugural Go Purple Game raised $3,000.

This season, they’re hoping for more.

* * *

Dj Hackney still marvels at the confluence of events.

His basketball coach from his freshman year in Bartlesville now coaches at his daughter’s high school.

What’s more, Wes Brown was willing to help with a cause that hasn’t touched him directly.

“We feel very fortunate,” Hackey said. “We thought something like that would never happen.”

Even after all these years, they’re still part of the same team.

Jenni Carlson: Jenni can be reached at 475-4125. Like her at facebook.com/ JenniCarlsonOK, follow her at twitter.com/jennicarlson_ok or view her personality page at newsok.com/jennicarlson.