Pampered Chef event will help Ewing youth
By:Vanessa S. Holt
BORDENTOWN CITY A Mercer County family will be able to attend a medical conference in New Orleans to learn more about their son’s rare neurological disorder thanks to the efforts of a local woman and everyone who helped her raise money.
Lisa Hartman, a Mary Street resident, met the Tulumalo family last year at a community event in Ewing, where the family resides.
Ms. Hartman normally hosts kitchen shows at her Bordentown home as a Pampered Chef kitchen consultant, demonstrating and selling products, but she also holds fund-raisers through the program, with a portion of the proceeds from the sales going towards a special cause.
She was moved by the plight of Amanda and Chad Tulumalo and their 2-year-old son, Devin, who has Joubert’s Syndrome.
Ms. Hartman said she wanted to help them any way she could and raised over $3,000 to get the family to the Joubert’s Syndrome Foundation conference.
The disorder affects the cerebellum portion of the brain, which in some cases is misshapen and in others is missing.
The cerebellum controls balance and muscle coordination and affects some other functions as well.
For example, Devin has a sensory integration dysfunction, which makes it difficult for him to take in some sensory information such as loud noises, said his mother.
"When my pediatrician called to tell me it was on the MRI results I didn’t even know what Joubert’s Syndrome was," said Ms. Tulumalo.
That is not surprising, she said, because only about 324 children in the world have been diagnosed with the rare neurological impairment.
Many people with Joubert’s Syndrome will face the risk of developing kidney and liver disorders as well, she said.
Breathing problems and difficulty talking and learning how to walk are also common in individuals with Joubert’s Syndrome.
"I believe that he will walk unassisted someday," said Ms. Tulumalo. "I think he will eventually talk, but he might not be understood easily."
Devin has learned some sign language to communicate but he may not fully develop his capacity for speech until his teen years.
He will attend a special education preschool in Mercer County and his family hopes to see him integrated into a regular classroom before long.
"He’s smart and he needs to be with kids who are at the same level, but he needs to overcome the physical barriers first," said his mother.
Ms. Tulumalo said her son has a great sense of humor and has already developed a love of music. A former music teacher, Ms. Tulumalo said she was happy to see that he becomes calm when music is playing and he even gets into the rhythm of the music.
The family wanted to attend the conference so they can understand more about the unusual syndrome and meet other families who are coping with it.
Doctors who are researching the syndrome will be able to update the families on the latest developments and may be able to offer new options for therapy.
They also will get to meet some adults with the syndrome and learn more about what to expect and prepare for as he grows up.
"We’re so thankful that we can go," she said.