What comes first to Lisa Huddleston is not knowing.
Her second child and only daughter, Hailey, must have been 2 years old when she walked into her parents’ bedroom.
“I think she had (a seizure) at the time, but the doctor thought she was sleepwalking and had a night terror,” Huddleston said. “One morning it was very clear that she had had a seizure at the breakfast table and we were eating cereal. I don’t think I had dinner that night.
It would take four or five days before Tim and Lisa Huddleston, owners of the Irwindale Speedway, found out what their daughter was suffering from. Hailey had Tuberous Sclerosis Complex, or TSC, a rare genetic condition that causes tumors to form in organs such as the brain, kidneys and eyes.
For the first time, the Step Forward to Cure TSC Walk, celebrating its 20th anniversary, will take place at the Speedway. The walk takes place from 9 a.m. to noon on May 14 at 500 Speedway Drive, Irwindale. Walkers, not drivers, race the Irwindale Speedway track to raise awareness of TSC.
Knowing what was causing their daughter’s seizures was the first step in coping with the diagnosis.
“My philosophy of dealing with adversity, I think, changes over time,” Huddleston said. “Right now, my philosophy is ‘here, now, everything is fine.’ When a situation requires our attention, we go into repair mode.As the motto of the TSC Alliance, “We will give up anything but give up!”
A special guest of honor this weekend will be Hailey Huddleston herself, now 21 and a student at Boise State University in Idaho.
“I take each new journey, experience or fight one step at a time with one foot in front of the other,” she said. “It can be scary not knowing what’s going to happen and that at any moment I could have a meltdown or something could happen to me that I can’t control. Although it’s scary and unpredictable, every bump on the road makes me more ready to look TSC in the eye and say it’s not controlling me, it’s my life and TSC is just something that makes me more unique.
The Huddlestons, whose sons Trevor, 25, and Tanner, 18, are attacking the TSC as a unit. Lisa Huddleston recalls her boys doing their part to make sure their sister stayed safe when she had a seizure in the middle of the night.
“Hailey is supported by her brothers in the most incredible way, it absolutely touches my heart,” she said.
Living with TSC from day one has been difficult. Aside from the specter of seizures, the medications made it difficult to concentrate and remember information. Hailey remembers having fits in the middle of class in middle school and high school.
“When I have grand mal seizures (full body convulsions), it knocks you out and exhausts you and hurts you mentally and physically,” Hailey said. “After a crisis, it takes me a few days to get back to good health, so I miss school and often can’t do my homework. Not only does this set my grade back and put me behind in class, but having to catch up on learning new subjects and doing new assignments causes a lot of stress, which is one of my main triggers for seizures.
The Huddlestons supported their daughter as they learned to live with TSC, even tearfully accepting when she decided to attend college away from home.
Hailey said it was a good thing.
“I have become stronger in so many different aspects of my life,” she said. “I learned that I can overcome challenges despite how I feel during them. Especially now that I am living independently in college, I have learned to control and solve problems on my own since I am so far away from my parents and doctors in California. I think living an independent lifestyle throughout college made me realize how strong I am and how much I can accomplish despite the challenges that come with TSC.
She still struggles knowing every day that anything can happen at any time. The pandemic has been a blow, she said.
“I felt such anxiety that I couldn’t even leave my apartment,” she said. “Seeing all the things I missed and the friendships that faded because people didn’t understand what I was going through was one of the hardest things in my life. In the past I had thoughts and dangerous experiences where I wanted to give up, but I was voicing what was going on in my head, and my family, friends, and doctors were all there for me whenever I needed them to get me out of those dark times. .
Her circle of support are her biggest cheerleaders.
They encourage his plans, including medical school or graduate school. She would like to be on the other side of the medical equation.
“Ever since I was little, I’ve always loved helping students who were injured or needed help in general. I knew I wanted to be someone who could potentially save lives one day, just like other kids. ‘have done for me,” she said. “After years of being tested and analyzed and countless doctor’s appointments, I became very intrigued by all that they did, from getting an IV in the back of an ambulance to watching my brain waves on the EEG. Since then, I always ask to see my MRIs or my blood results because one day I hope that I too can try to find a cure for TSC.
The walk will be a healing moment for anyone affected by TSC, Hailey said.
“I’m so lucky to have the privilege of meeting these people and seeing that they know exactly how difficult it can be to live with this, and we can feel each other’s pain and understand each other.” , she said.
Now that the Huddlestons know so much about TSC, they hope people will find community in the TSC Alliance.
“After this walk, I hope people will have a different view of how they approach people and how they treat them,” Hailey said. “If you looked at me from the outside, you might not think anything is wrong, but if you knew what’s going on inside and the things you don’t see, you would treat them differently. I also hope that people will come away with more knowledge about TSC, even if it’s just a simple thing, and that they will have more respect for those who have to live with something as difficult as the TSC.
For her parents and brothers, Hailey’s struggles and triumphs will come full circle on the Speedway track. She’s in the driver’s seat of her medical journey, and they couldn’t be prouder.
“She’s the bravest and strongest girl we know,” her mother said. “She is such a compassionate young girl who always takes care of those around her. She never feels sorry for herself and always tries to find a way or a solution in difficult times. She is very open about her journey with TSC because she knows it could help others in some way.
For more details on the May 14 walk, the virtual benefit auction — May 11-15 — and to register for the walk or donate: bit.ly/3FCU61r. 626-358-1100. www.irwindalespeedway.com
Anissa V. Rivera, Columnist, “Mom’s the Word,” Pasadena Star-News, San Gabriel Valley Tribune, Whittier Daily News, Azusa Herald, Glendora Press and West Covina Highlander, San Dimas/La Verne Highlander. Southern California News Group, 605 E. Huntington Drive, Suite 100, Monrovia, CA 91016. 626-497-4869.