RALEIGH, N.C. (WNCN) — The mom of a Raleigh toddler with a rare genetic disorder hopes neighbors across the Triangle will light up their streets this holiday season to support research to find a cure.
When Wesley Musselman giggles it’s hard not to smile along with him, but thoughts of her son’s struggles sometimes bring his mother to tears.
“It’s been quite a journey,” said Virginia Musselman.
When Wesley was just five days old, his doctor noticed a heart murmur and sent him to a cardiologist.
“The cardiologist came back and said, ‘Your son has all these tumors in his heart,'” Musselman recalled.
The diagnosis: Tuberous Sclerosis Complex, or TSC, a genetic disorder that causes benign tumors to grow on various organs throughout the body. It affects about 1 in 6,000 people and often leads to developmental delays and seizures.
“He looked so perfect on the outside — to learn that he had tumors in various places, it was just heart-wrenching,” explained Musselman. “We prayed and prayed that he would not develop seizures, but he eventually did.”
Last Christmas, the family traveled to Houston for a surgery they hoped would stop the seizures. He had brain surgery on Christmas Eve and woke up in the ICU on Christmas morning.
Although the procedure works for some children, it didn’t stop Wesley’s seizures, so doctors are treating him with medications.
“It’s just kind of like whack-a-mole,” said Musselman. “You try one thing to see if that works, and something else pops up.”
Wesley also receives different types of therapy to help with his developmental delays.
His mom does everything she can to help her son, including volunteering with the TSC Alliance, which raises money for research.
As a fundraiser this Christmas, several neighborhoods in the Triangle can purchase luminaries to light up their streets.
The family plans to travel to the neighborhoods to see all the lights. It’s a sign of hope and support, the mother knows Wesley will love, especially after spending last Christmas in the hospital.
It’s not clear exactly how Wesley’s condition will affect him in the long term. He’s currently 2.5 years old.
“We are trying to plan for a future of maybe he will be dependent, but hoping for the best that maybe he will have somewhat of a normal life,” Musselman said.
For now, though, they are celebrating every step forward and every moment that makes him smile.
“He’s going to be excited to open his Christmas gifts under the tree, not in a hospital bed,” said Musselman. “I’m excited to see the joy of Christmas in his eyes.”
This year, neighborhoods participating in the luminary event include Wakefield, Tealbriar, and Heatherstone in Wake County and Carolina Arbors in Durham.
If your neighborhood is not participating, but you’d like to learn more about TSC, click here.