Carson Jones was not yet born when his parents and doctors realized something was not quite right. Deep in Carson’s skull — basically in the dead center of his brain — was a Hypothalamic Hamartoma, also known as a tumor.
A Hypothalamic Hamartoma is a benign formation on the hypothalamus, the area in the brain that controls the production of hormones by the pituitary gland. Such hormones regulate many bodily functions, including metabolism and the body’s reaction to stress.
Although it was a scary prognosis, Carson’s parents Doug and Mauri said it was the first answer they had received since questions began during the second trimester. Still, the diagnosis launched a years-long quest for answers.
“Medicine is a funny thing. The doctors were able to tell us what they knew it wasn’t, but they could not tell us what it was — benign or cancerous, something that could be operated on or not, what kind of impacts it would have — there were so many unknowns for even these experts,” Doug says.
After his birth, Carson was healthy except for regular gelastic seizures, a term used to describe seizures with bouts of uncontrollable laughter or giggling. Sometimes, he would have more than 30 gelastic seizures a day.
The seizures impacted Carson’s ability to verbally communicate with his parents, so the family began speaking with sign language.
At two years old, Carson’s family and doctors decided they would attempt to remove the tumor — a first-of-its-kind surgery at that time for the specialists at Seattle Children’s Hospital.
Hypothalamic Hamartoma is a rare disease with an incidence rate of approximately two per 100,000 people. Because of the rarity, Doug and Mauri were left with many unanswered questions, which took a toll.
“Being worried and uncertain about the future was wrecking me,” Doug says. “You have to come to this point and recognize that you don’t have control. You have to lean in to believing that things will be OK, that our end result is always better than our current condition.”
Eventually, after much thought and prayer, Doug and Mauri decided to go to Barrows Neurological Institute at Phoenix Children’s Hospital for the surgery because the clinic had the most experience with the condition.
An eight-hour open-skull resection was performed on Carson, where the doctors were most concerned with detaching the tumor versus removing it. Because of how Carson had to lay and how the surgical tools were resting, pressure was placed on his optic nerve, which caused initial issues with Carson’s ability to see after the surgery, but thankfully his vision was restored.
The operation was successful, however the recovery was long. Because the tumor was attached to the hypothalamus, Carson’s body had to restore its hormone and sodium regulation.
Because of the surgery, Carson is now able to lead a regular life with only a scar to remind him of the severity of the situation.
Now at age 13, Carson is an avid pickleball player who hits the courts three to five times a week, often with people who are much older than him, something Carson enjoys.
“If you play with a bunch of different people, then you make a bonding relationship with them — and it is enjoyable and fun to see them,” Carson says.
Carson started playing pickleball after watching his Mom play. At the time, he was working toward his first-degree black belt in taekwondo, but after he earned it, he began playing pickleball more.
He instantly fell in love with the sport.
As a lefty, Carson enjoys teaching his partners how to stack so they “don’t have to leave the middle open.” Although he loves sharing his knowledge, he also enjoys playing with people who have a higher skill set than him so he can learn, adapt and continue to grow his skills.
Carson is now a Junior Selkirk Advocate and is ecstatic about the future that lays ahead. When he was accepted into the program, Doug immediately texted Carson a photo of the acceptance letter.
“I was at school when he sent it to me, I was at lunch and I checked my texts and he and I were so excited. I honestly couldn’t believe it,” Carson says.
Now as an official advocate, Carson has ordered his initial Selkirk gear and is planning out his pickleball schedule for 2024.
In his free time, Carson paints artwork to benefit the nonprofit organization Hope for HH, which provides research to help other families affected by Hypothalamic Hamartoma.
