A Buffalo student suffering from severe juvenile arthritis recently had a chance to live out her dream of becoming a chef. In this Focus on Education report, WBFO's Eileen Buckley learns that despite a difficult disease, the teenage girl recently graduated from School 89 in Buffalo and is now ready to enter Hutch Tech as a freshman this fall.
It was an exciting moment for 14-year-old Jaylynn Rivera. She had a chance to interact with the head chef at Ristorante Lombardo on Hertel Avenue, Michael Obarka.
"What's your favorite thing to eat," asked Obarak.
"My mom makes chicken cutlets with maybe pasta," responded Rivera.
Rivera is petite. She's much smaller than an average 14-year old girl, measuring only 48 inches and weighing about 41 pounds. But when she speaks, a wise young lady emerges.
"I like to cook because it's really fun and there's something, when I cook, that just gets me so excited," said Rivera.
At just 15 months old, Rivera was diagnosed with Juvenile Idiopathic Arthritis. She's one of 50,000 children in the United States affected by the disease.
"It's an autoimmune deficiency. It also brings in arthritis which is basically the most part of Jaylynn's disease," said Brandy Rivera, Jaylynn's mother.
She describes it as a very painful disease for her daughter.
"She suffers a lot. She spends a lot of time at home in a lot of pain and discomfort. We do have some pain medicine that does help her," said Rivera.
River can use her hands, but her disease has left her legs immobile.
"The disease took it so far that it took all the strength in me where I can't walk," said Jaylynn Rivera. "About a year and a half ago it totally took over and now she is no longer mobile."
Rivera tells WBFO she has good and bad days. But it didn't prevent her from completing her elementary school education. This fall, she begins her freshman year at Hutch Tech and despite being brave about her disease, like any freshman, she's worried about going to a new school and being an underclassman.
"I am excited, but I'm also nervous because I'm going to be this little, tiny person with these big kids," said Rivera. "I'm just so afraid that they would like to be my friends or not, if they'll will be mean or nice."
But Rivera interaction is adult-like. She loves to cook and would like to become a chef someday. Rivera receive care from a Hospice program called Essential Care for Children. When her pediatric home care team learned of her dream, they wanted to give her a chance to work at a real restaurant.
Tom Lombardo, owner of Lombardo's, was happy to assist. He met Rivera and her mother inside his restaurant to explain what would be happening in the kitchen.
"My staff usually get's here around 1 o'clock in the afternoon," said Lombardo. "We get every thing ready so that we are going to be ready to serve at 5 o'clock," said Lombardo.
Rivera has been enrolled in the Essential Care for Children program the last three months, a program her mother was thankful to find.
"The day we got in touch with those group of people was like a blessing in disguise. They've helped her so much," said Rivera.
The Hopsice program Rivera is enrolled in protects children with any life-threatening illness. Rose Collins, Public Relations Community Marketing Director at The Center for Hospice Care, brought along a special chef’s uniform to celebrate Rivera's “chef for a day” experience.
"She's in our home-based palliative program, meaning we focus on care symptom management to try and control symptoms so it can reduce the need for her to go to a hospital," said Collins.
Inside Lombardo's kitchen, Lombardo chef Obarka enthusiastically explained how they will cut up chicken breasts to create the cutlets that will be pounded and breaded. He sets up Rivera next to him to assist. He joked and told her to keep an eye on his staffers working nearby. http://youtu.be/pQx-5p_haiI
Rivera looked like a natural, cracking eggs with ease as she helped prepare the batter for the breading.
Brandy Rivera is a faithful woman. She has enjoyed the moment of watching her daughter serve as 'chef for the day,’ but noted she can only leave the future of her daughter's health in "God's hands."
"Some children do grow out of it and we are, in the faith of God, hoping maybe one day it will happen, and she will be okay," said Rivera. "It is hard some days."