Family Participated in “Step Forward to Cure TSC” to Raise Awareness

When Hailey Huddleston was just two years old, she had her first seizure. At first, her parents – Tim and Lisa – weren’t sure if Hailey was having a night terror. But when, the next morning, Hailey experienced another seizure at breakfast, her parents knew something was wrong. After some testing, Hailey was eventually diagnosed with tuberous sclerosis complex (TSC). According to the San Gabriel Valley Tribune, the Huddleston family recently participated in the TSC Alliance’s 20th “Step Forward to Cure TSC Walk” on May 14th, 2022. In fact, the family, who owns Irwindale Speedway, actually hosted the event! 

What is Tuberous Sclerosis Complex (TSC)?

Tuberous sclerosis complex (TSC) is a rare genetic disorder characterized by the growth of benign (non-cancerous) tumors throughout the body, including the skin, brain, kidneys, heart, or other organs. TSC1 or TSC2 gene mutations cause this condition. Normally, these genes stop cells from growing uncontrollably. So, the mutations allow uncontrolled cell proliferation. 

Typically, TSC is detected during infancy or childhood. This condition is variable; while some individuals experience mild symptoms, others experience more debilitating symptoms. However, in many cases, individuals with TSC will have a normal lifespan. When symptoms appear, these can include:

  • Facial lesions resembling acne
  • Skin abnormalities, including light-colored skin, thickened skin, or growths on/under nails
  • Developmental delays
  • Behavioral problems, such as hyperactivity, aggression, or repetitive behaviors
  • Seizures
  • Sleep disturbances
  • Hydrocephalus 
  • Heart, kidney, lung, and eye abnormalities

Hailey’s Experience

Now, at 21 years old, Hailey Huddleston has learned how to manage her condition and some of the struggles that come along with it. Hailey, who is currently finishing up her studies at Boise State University, knows that the road in front of her may come with obstacles or bumps. But she is committed to taking on each day as it comes and sees TSC as something which only makes her more unique – more herself. 

Of course, it took some time to get to this point. While growing up, Hailey grappled with education difficulties; her seizures and treatments sometimes made it difficult to focus or to remember important facts. Sometimes she even had seizures during school.

But between her own motivation, and the support of her family – including brothers Tanner and Trevor –, Hailey has thrived. She is even considering going on to medical school to help others in need.

She was excited when she learned that her parents were hosting “Step Forward for TSC.” In addition to getting to engage with her community and provide support, she hopes that this event will help raise even more awareness about TSC.

Jessica Lynn

Jessica Lynn

Jessica Lynn has an educational background in writing and marketing. She firmly believes in the power of writing in amplifying voices, and looks forward to doing so for the rare disease community.

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