Baldwinsville boy with tuberous sclerosis complex honored by Syracuse mayor; TSC Awareness Day is May 15

SYRACUSE — The first two weeks of Jude Langstaff’s life were nothing but typical for a newborn: eating, sleeping, diaper changes. But then, Bridgett Langstaff noticed something different about her baby.

“He was 2.5 weeks old when I noticed some white patches on the back of his legs,” Bridgett recalled. “Of course, it was after his two-week well child visit.”

Jude’s pediatrician looked at the strange splotches with a Wood’s lamp, which emits ultraviolet light.

“They turned out to be ash-leaf spots,” Bridgett said.

While an ash-leaf spot here or there might just be a birthmark, three or more of these hypomelanotic macules — aka areas of skin that produce less pigment — can be a symptom of a rare genetic disorder, tuberous sclerosis complex (TSC). According to the Tuberous Sclerosis Alliance, about one in 6,000 babies is born with TSC, which causes benign tumors of the skin, brain, kidney, heart, lungs or eyes.

Now 12 years old and in sixth grade at Ray Middle School, Jude is thriving. He loves music and cracking jokes, and like most adolescents, has a bottomless pit for a stomach. But his path has not been an easy one.

“Jude has two types of brain tumors — and had brain surgery when he was just 3 — tumors in his heart, two types in his kidneys, on his skin, both eyes, and bones,” Bridgett told the Messenger.

When Jude was not quite 1 year old, the family began participating in the TS Alliance’s fundraising walk, Step Forward to Cure TSC. Since 2009, the Langstaffs have helped raise more than $100,000 for the TS Alliance.

“They are the only organization in the United States that supports families like ours,” Bridgett said.

Bridgett Langstaff is shown here with Congressman John Katko. Bridgett volunteers on the TS Alliance’s government advocacy committee, which travels to Washington, D.C., to urge elected officials to support research funding for TSC.

The pandemic has thrown a wrench in many fundraising events like Step Forward to Cure TSC, but the Langstaff family — which in addition to Bridgett and Jude includes dad Jon, a teacher at Reynolds Elementary, and sister Lundy, an eighth-grader at Durgee Junior High School — still has managed to raise $1,000 this year. They will be holding a smaller, informal version of the walk this Saturday, May 15, at Onondaga Lake Park, which coincides with the TS Alliance’s global virtual event May 15-16.

“I have a lot of nurse friends who are all vaccinated and a lot of family and friends who want to see Jude,” Bridgett said.

On May 10, Jude met with Syracuse Mayor Ben Walsh, who agreed to issue a proclamation recognizing May 15 as TSC Awareness Day.

Bridgett, a registered nurse, works in the pediatric intensive care unit at Upstate Golisano Children’s Hospital. She is often asked to meet with families whose kids have been diagnosed with TSC.

“Googling a rare disease is scary, so [it’s better] if you have a known trusted source of info like the [TS] Alliance to send people to,” she said.

After Jude was diagnosed with TSC, he began to have seizures. At one point, he suffered hundreds of seizures each day. The family consulted with Dr. Elizabeth Thiele, a neurologist at Massachusetts General Hospital who specializes in pediatric epilepsy and TSC. Jude underwent surgery at age 3.

“He blossomed. He figured out how to walk, he started making verbalizations again,” Bridgett said.

Jude Langstaff, 12, of Baldwinsville, has a rare genetic disorder called tuberous sclerosis complex (TSC). Since 2009, the Langstaffs have helped raise more than $100,000 for the TS Alliance.

“Prince Jude,” as the team at the Herscot Center for Tuberous Sclerosis Complex dubbed him, was the first Baldwinsville student whose IEP (Individualized Education Program) officially included music therapy, Bridgett said. Music has helped Jude improve his speech and retain other skills.

The isolation of the pandemic has been hard for Jude, who requires a one-on-one aide and other services while at school.

“To engage with people on the computer was challenging,” Bridgett said of remote schooling.

The Langstaffs were pleased when Jude and other students who require special education services were able to return to in-person classes for the 2020-21 school year.

“They thrive on that consistent routine and schedule,” Bridgett said.

Despite his difficulties, Jude maintains his sunny disposition — “He’s just so easygoing and so funny,” Bridgett said — and is happy to be back with his friends at school.

“He’s our joy,” Bridgett said.

To donate to the Langstaffs’ fundraising efforts for Step Forward to Cure TSC, visit give.tsalliance.org/TeamJude/.