AUSTIN (KXAN) — Families in Texas with kids who have suffered life-altering brain injuries will be heading to Austin this weekend to learn about how to better manage the path ahead.

Advocates tell KXAN while there is research and support for those with brain injuries, there is a limited amount of information for families helping their kids through these next steps. 

The Making Connections Conference will be held at Life Austin Church at 8901 West Highway 71 on Sept. 8 and will be the second conference of its kind for Texas families. The conference is hosted by the Texas Brain Injury Alliance and the nonprofit Team Luke Hope for Minds.

Team Luke Hope for Minds was created out of two separate Texas stories of traumatic brain injury.

In 2008, 11-year-old J.D. Hartman lost oxygen to his brain after a near-drowning in a family hot tub in the Austin area. The organization created to support his family merged in 2018 with the foundation created by the family of Luke Siegel.

Siegel is a boy in Lubbock who was injured in a 2015 golf cart accident, severely limiting his ability to move and communicate. 

Tim Siegel, Luke’s father, explained that after the accident there was no roadmap for how his family should handle the medical and financial hurdles ahead — even doctors weren’t sure how to advise him.

Slowly the Siegels have established a routine for Luke, by driving each week from Lubbock to Fort Worth to get the therapy he needs. But living with this new normal has presented many emotional and confusing challenges for the Siegel family, which is why Team Luke Hope for Minds has focused on ways to show other families what resources are available like this conference. 

“With each milestone that a child hits, just normally developmentally, more issues from the brain injury continue to occur,” explained Kelly Ramsey, president of the Texas Brain Injury Alliance. “So it’s not an event that just happens once for somebody, it stays with them for their lifetime.”

Ramsey hopes that in the long-term, Texas does more to coordinate support for children with brain injuries at every stage as those children grow up. But until that happens, she’s putting energy into efforts like the conference to help families along. 

Families like the Sinclairs of Austin will be attending the conference. Their daughter Charley suffered a brain stem injury when a wrong-way car crashed into their family vehicle back in 2016. 

The injury left Charley unable to talk and walk, though with someone helping to hold her she is on her way to taking steps again.

“You are on your own — when you’re released from the hospital you’re kind of lost,” said Charley’s mother, Shannon Sinclair. 

After the crash, Charley had to stay in the ICU for three months, then rehabilitation for another three months. Shannon said at first their family was unsure about how to handle insurance, therapy and many aspects of daily life. She added that often their health care professionals wouldn’t know where to send them for help. 

“A lot of times they don’t know where to go,” she explained, noting that’s why she sees the conference as an important resource. “So it’s a great place where we can all meet and share our stories.”

Organizations like Team Luke Hope for Minds filled in the gaps for the Sinclairs.

Shannon explained that Charley is getting better and stronger every day, yet their family still has many more unanswered questions about what her daughter’s future will hold given this disability. She is hoping having a community of families and experts around her helps to answer some of those questions.

The Centers for Disease Control calls traumatic brain injury a significant public health problem in the U.S., with children having the highest rate of emergency department visits for TBI in all groups.

The most recent statistics available on the CDC website from 2013 show TBI contributed to nearly 640,000 emergency department visits and 18,000 hospital stays in children 14 and under.