The Valentine’s Journey with Cerebral Palsy Awareness

Hayden Valentine — daughter of men’s basketball head coach Drew Valentine and his wife, Taylor — was diagnosed with cerebral palsy around her first birthday in May 2022. For the second year in a row, men’s basketball hosted cerebral palsy awareness night Feb. 28 in her honor, advocating for awareness of the disease and creating a safe space for families who’ve been affected. 

Cerebral palsy is the main cause of childhood disability, according to the Cleveland Clinic, with between 5,500 and 13,100 children born with it each year. Cerebral palsy manifests itself due to brain damage during fetal development.

Hayden Valentine was born three months early in April 2021 and wasn’t able to come home from the Neonatal Intensive Care Unit (NICU) until July of the same year. During birth, Hayden had a Grade 4 Brain Bleed, where bleeding in the brain occurs in the brain tissue and surrounding ventricles, according to Stanford Medicine Children’s Health. Taylor Valentine said the Valentine’s went to visit their child every day. 

“When Hayden was in the hospital when she was first born she was two pounds and she’d been in the NICU,” Drew Valentine said. “I didn’t know what this was. I didn’t know if my daughter would make it.”

During one of Hayden Valentine’s NICU follow-up clinics — where Taylor Valentine said doctors check up on the child in every single category for any developmental issues — a neurologist threw out the idea of a cerebral palsy diagnosis. 

“We had just noticed in her therapies — because when you’re admitted to the NICU, they typically have you go to [physical therapy] and [occupational therapy] just as a precaution,” Taylor Valentine said. “They just started noticing little things that maybe would indicate that she was going to be diagnosed with [cerebral palsy].” 

Taylor Valentine said the brain bleed during birth was likely the cause of the cerebral palsy diagnosis for Hayden. 

Hayden is the first child of the Valentine’s, bringing on a multitude of challenges for both of them. With the addition of the cerebral palsy diagnosis, Taylor Valentine said both she and Drew being athletes growing up — Taylor playing volleyball and Drew playing basketball — helped them understand how to best take care of their daughter. 

“I think in the beginning it was a lot tougher, because I was a new mom,” Taylor Valentine said. “Everything was new for me, and that was scary. The best part about the diagnosis is that we’ve now got a game plan, whereas before the diagnosis, we didn’t know what we were doing. Now there’s all these resources…we’ve got these different avenues that people who have gone through this before have opened the door to. A lot of different things that have really helped her a lot.”

One of the many ways the Valentine’s lives changed with the diagnosis was the copious amount of doctor appointments they now have to take their daughter to. This includes physical therapy, occupational therapy and various intensives — roughly two week long training sessions for patients with cerebral palsy. The Valentine’s even traveled to Dallas to get the best care for Hayden. 

Hayden Valentine attends Connect with Kids in Dallas, which Taylor Valentine said they go to two to three times a year. She also attends the Shirley Ryan AbilityLab — a rehabilitation facility in Streeterville, who had a table in Gentile Arena during the cerebral palsy awareness game this season. 

The Valentine’s recently enrolled Hayden into a clinical trial at Duke University for an umbilical cord blood transfusion. 

The original trial, published in 2017, concluded children who received a dose of at least 20 million stem cells per kilogram of their body weight saw improvements in motor function within a year. 

While the original trial was conducted using a child’s own umbilical cord, this specific trial has increased to acceptable transfusions from a sibling or a publicly banked cord who share the same blood type as the recipient. The clinical trial is still under phase two. 

Despite still being in trial, Taylor Valentine said she’s hopeful for the mobility Hayden can gain from the transfusion. 

One of the biggest ways of advocating for cerebral palsy the Valentine’s have done is creating a merchandise line inspired and created by Hayden. Men’s basketball players wore the shirt designed by Hayden during warm-ups of the game against the University of Richmond. The shirt shows a butterfly of Hayden’s hands captioned with “Watch Me Fly.”

A friend of the Valentine’s runs a nonprofit organization called the Jake Max Foundation, celebrating creativity and advocacy through those with disabilities, according to their website. Taylor said the foundation helps bring awareness to various disabilities. 

For Taylor, the game against the Spiders Feb. 28 was a perfect time to host the awareness game because March is cerebral palsy awareness month. The Valentine’s praised the Loyola Athletics Department staff, specifically Sports Information Director Kayla Peterson, for all the work contributed for the day. 

For the Valentines, the cerebral palsy awareness game wasn’t only about celebrating their daughter, but being able to form a community within a community and making Gentile Arena and Loyola men’s basketball a safe space for those who have cerebral palsy. 

“We want to have people within the [cerebral palsy] community feel like, ‘Your basketball family supports me. I’m gonna be accepted, my kids are gonna be accepted,’” Drew Valentine said. “We want to create happiness and create an environment where everybody feels accepted.”

Hayden — who turns five in April — enjoys playing with her little brother, Kellen, going to school and making new friends and horseback riding in the summer. She recently started taking swim lessons and can float on her back all by herself. 

What Taylor Valentine said Hayden Valentine loves the most is being able to support her dad during basketball season. Drew Valentine said in a video released by Loyola Athletics that he and Hayden watch basketball together and talk about different teams. 

One of the challenges Taylor Valentine faces is Drew being away during the season, but knowing basketball is seasonal helps, especially since it’s a lifestyle the Valentine’s are used to. Being the head coach of a Division I program is hard, but Taylor Valentine said when he’s home, he’s always dad and never coach. 

“He comes home with the biggest smile on his face every day,” Taylor Valentine said. “He could’ve had the shittiest day of all time and still walk in and be like, ‘I leave work at work, I come home and I’m dad.’ We know the weeks he’s going to have off, and you capitalize on those. Then when he’s busy, he’s busy.”

Dealing with leading a team and raising two kids, Drew Valentine’s top priority remains taking care of his daughter, Hayden. 

“We’re focused on her more than anything,” Drew Valentine said. “Making sure she’s good, but continuing to bring people together through the game of basketball.”