LAWRENCE: Dance-a-thon held to benefit rare disorder

By Lea Kahn, Staff Writer
   The Eldridge Park School was a hoppin’ place last Friday morning as students at the elementary school danced their way to raising more than $1,000 to benefit the Joubert Syndrome and Related Disorders Foundation.
   Children in the grades pre-K to 3 elementary school held a dance-a-thon to raise money for the foundation, which supports research into the rare disorder that affects about 900 people worldwide — including two Lawrence youngsters.
   Amanda Tulumalo, whose two sons, 12-year-old Devin and 8-year-old Jaden, are affected by the genetic disorder, was surprised and pleased by the fund-raising effort, which was held at the suggestion of Eldridge Park School Principal Kathy Robbins, guidance counselor Trisha Burns, music teacher Amy Amiet and physical education teacher Ryan Matheson.
   ”They came to me and said they wanted to hold a fundraiser for the Joubert Syndrome foundation. It was all their idea,” Ms. Tulumalo said. Jaden is a 2nd-grader at the Eldridge Park School, and Devin “graduated” from the school and is now a 6th-grader at the Lawrence Intermediate School.
   Joubert Syndrome is a genetic disorder that impacts each person differently, Ms. Tulumalo said. It affects the part of the brain that controls movement and coordination. It may affect vision, speech, movement and even the liver or kidneys, she said.
   Both Devin and Jaden are able to walk, but Joubert Syndrome has affected their vision and speech, their mother said. The boys learned to walk later than the typical child, and Devin has a learning disability. They are considered to have mild cases of the disorder, she said.
   To prepare the students for the dance-a-thon and to explain the disorder, a “factoid” about Joubert Syndrome was read to them every day during the school’s morning announcements last week. By the time the event rolled around Friday morning, they were ready, Ms. Tulumalo said.
   Ms. Tulumalo said she spent one morning last week reading a book — “Different is Just … Different” to the students in the Eldridge Park School library. The book was written by the president of the Joubert Syndome and Related Disorders Foundation, she said.
   ”We talked about differences. I was a little nervous. It turned out to be great for Jaden. He and the other children learned a lot about Joubert Syndrome,” she said. Jaden is somewhat aware that he is different from other children, she added.
   Ms. Tulumalo said she and her husband began to suspect there was something different with Devin because he did not have good muscle tone and he was unable to make eye contact. He was given a magnetic resonance imaging test (MRI) when he was 4 months old, which confirmed that there was something amiss.
   It took another year before they received a definitive diagnosis, she said. A physician in Chicago gave them a diagnosis of Joubert Syndrome. They were referred to another physician in Florida who specialized in the disorder. When Devin was born, there were about 125 known cases of children with Joubert Syndrome, she said.
   ”I felt really scared, but at least we knew what was going on,” Ms. Tulumalo said.
   When Jaden was born, she said that she and her husband knew there was a 25-percent chance he would be affected. He seemed fine, but they decided to have an MRI test done anyway. They were shocked to learn that he, too, had the disorder.
   The long-term prognosis is “sort of unknown,” Ms. Tulumalo said. A rare disorder is one that affects not more than 20,000 people, but Joubert Syndrome is a “really rare” disorder that affects about 900 people worldwide, she said. Not much is known about it, she added.
   ”It’s hard to gauge what the long-term health impacts will be. Will there be liver or kidney involvement? We take each day as it comes and we are trying to find out as much information as we can,” she said.
   Nevertheless, Ms. Tulumalo is pleased the Eldridge Park School community stepped forward and held a fund-raiser for the foundation. The money will be used to help create awareness of Joubert Syndrome and related disorders, especially for physicians, she said.
   ”It really comes down to the Eldridge Park School and the kind of community that it is. They are focused on being a ‘school of character.’ I am so thankful that they did this,” Ms. Tulumalo said.