This is the morning routine in the Corcoran household: Corarose Corcoran prepares several different types of medicine to give to her 19-month-old son, Jaxson.
“I’ll sing to him or play a song with a guitar in it or something and Dad will help get it into him. It’s more about distracting him away from the fact that he is taking a medicine,” said Corarose.
What You Need To Know
- Jaxson Corcoran started displaying symptoms of TSC at 5 months old. He had white patches on his skin and his head was dropping
- The Corcoran’s first thought he had a cold but later found out that Jaxson had a Tuberous Sclerosis Complex (TSC) a rare genetic disease
- Jaxson is on 5 medications for his TSC. He has epilepsy which causes him to have seizures every day. His parents have to time his seizures and spasms to know when to administer emergency medication or take him to the hospital
- Jaxson has to go Boston to see a specialist for his TSC. His family has a GoFundMe to help support those trips
Corarose said when Jaxson was 5 months old, she began noticing some odd behavior. He stopped drinking from his bottle, had white patches on his skin and his head was dropping.
“I had no clue. I thought honestly, I thought Jaxson was coming down with a cold and that’s why he didn’t want to eat anything or drink and he was just sleepy. I thought the movements were kind of him dreaming,” said Corarose.
When Jaxson’s behavior got worse, they brought Jaxson to the emergency room where he was diagnosed with TSC. Doctors told them that Jaxso's infantile spasms had caused him to regress. He would have to learn everything all over again, from chewing to flipping the page in a book.
Now their lives revolve around a schedule filled with doctors' appointments. Jaxson sees more than five different specialists. He has tumors on his kidneys, heart and brain. His epilepsy causes him to have seizures almost every day.
“It’s not too bad. It’s patience and long days and hard days and good days. But the good days match up to the hard days,” said Corarose.
Despite Jaxson’s spasms and seizures, he is just like any other child his age. He has a curious mind and loves to make noise.
“He is his own person and he’s very unique and that’s what I love about him. He is pretty amazing,” said Corarose.
Jaxson’s TSC means he has a high risk of autism and his symptoms need to be monitored and treated with medicine, but he’s expected to live a normal life.
His parents hope he can bring awareness to a rare disease that they never even knew of before.
“I’m trying to stop other moms and dads from that regression stage. And help them know that it's not normal for your kid to have the head dropping and white patches on their skin. Just the quick little indications and signs before something damaging happens,” said Corarose.
The Corcoran family ends their day the same way they start it: Singing a song to forget about the difficulties.
The TS alliance is a national organization that helps families affected by TSC. The Corcoans said they have played a major role in learning more about Jaxson's disease and getting him treatment.