Jaxson’s Story: Living with Tuberous Sclerosis Complex (TSC)

Jaxson Corcoran was born with tuberous sclerosis complex (TSC), a rare genetic disorder that is characterized by benign tumors forming throughout the body. Treating this condition has become a family effort, with his mother and father providing around-the-clock care. While it was difficult in the beginning and can still present obstacles, the Corcoran family is learning how to handle the rare disease and has connected with nonprofits like the TS Alliance.

Jaxson’s Story

Jaxson was diagnosed with TSC at five months after his parents noticed that something was not right. He was unable to hold his head up, refused to eat, and had white patches spattering his skin. His symptoms continued to progress – seizures became common – to the point that Jaxson’s parents knew they had to take him to the hospital.

After arriving at the emergency room, the Corcorans were given life-changing news: Jaxson has tuberous sclerosis complex. Not only were they given the diagnosis, but doctors also informed them that the seizures had caused him to lose all the developmental milestones he had already reached, such as chewing or playing with toys. He would have to start over and relearn everything.

Life With TSC

While it was difficult to adjust to all of the changes that Jaxson’s diagnosis brought, the Corcorans have learned and made the necessary adjustments. Their new morning routine includes coaxing multiple medications into Jaxson, who is now 19 months old. They often have to make the journey from their home in Oswego, NY to Boston, MA so that Jaxson can receive specialized care, which disrupts their normal routine. You can support these trips through the Corcoran’s GoFundMe.

Jaxson’s parents are so happy with their curious, bubbly son, and they wish that more would be done for TSC patients. They aim to bring more awareness to the condition, especially in helping parents recognize the signs and symptoms. In working with the TS Alliance, this family has been able to learn, advocate, and get the proper treatment for their son.

About TSC

TSC is a rare, genetic disorder that is characterized by benign tumors that form throughout the body, but most commonly in the brain, lungs, skin, heart, and kidneys. Symptoms can range in severity and between patients depending on where these tumors grow and how many there are. Possible effects include:

  • Seizures
  • Developmental delays
  • Problems with the heart, lungs, and/or kidneys
  • Behavior issues (Outbursts, hyperactivity, withdrawal, aggression, repetitive behaviors)
  • Issues with communication and social interaction
  • Facial lesions
  • Eye abnormalities

Either the TSC1 or TSC2 gene is mutated in those with this condition. These genes are typically in charge of ensuring that cells do not divide and multiply too quickly. When mutated, cells can divide and reproduce out of control to form tumors. Both genes are inherited in an autosomal dominant pattern. While there is no cure, treatment can manage symptoms.

To read the Corocoran’s full story, click here.

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