WESTPORT — Like many graduating high school seniors, Michaella Lesieur has set lofty goals and wants to make a positive difference in the world.

The 18-year-old Westport High School student has already charted a clear course, and, inspired by her mother’s rare medical condition, continues to raise awareness and funds to find a cure for eosinophilic associated disorders, a group of debilitating chronic diseases that rob children and adults of their vitality.

“I want to help find the cure,” Lesieur emphasizes. “That’s my goal. It’s something that I want to continue for the rest of my life.”

Lesieur became aware of the diseases when mother Madaline was diagnosed with hypereosinophilic syndrome, HES, about 10 years ago at a Boston hospital. The condition is one of five eosinophil associated disorders that affect various organs. An eosinophil is a type of white blood cell associated with allergies, parasites and cancers. Symptoms include chronic night sweats, fatigue and pain.

Despite her young age, a strong desire to help her mother, whose lungs are affected by the potentially fatal disease, fueled Lesieur to begin her quest to learn about the disorders by reading published materials, searching the Internet and talking to families affected by one of the debilitating medical conditions.

“Being introduced to this disease at such a young age made me want to reach out to those who are suffering to help find a cure,” says Lesieur, who will attend Bristol Community College in September.

“I’ve spent hours and hours educating myself,” she adds.

As the determined young woman prepares for graduation, Lesieur took her advocacy one step further and developed a senior project, a requirement for graduation, to inform her peers
and teachers about the disorders for which there is no known cure.

“I found out Day 1 of freshmen year about the project,” Lesieur recalls, adding that she had no difficulty selecting a topic for the important assignment, which includes a 10-page written paper and PowerPoint presentation.

“Michaella began her project with a focus I have never seen in a student before,” explains Jessica Brittingham, the graduating senior’s English teacher. “On Day 1, she knew exactly what she wanted to do and how she wanted to get there.”

Brittingham says that Lesieur put a great deal of thought into the project, which is unique insofar that the student’s personal connection to the topic helps drive her commitment.

“Michaella’s dedication to her mother became quite apparent to me early in the project and, in many ways, this project has allowed her to help her mother,” the educator observes.

Julie Springer, APFED’s national fundraising coordinator, describes Lesieur’s volunteerism as incredible.

“She is mature beyond her age and an inspiration to other kids whose family members are affected,” Springer notes, adding that while the number of diagnosed cases is constantly increasing, there are no statistics available that indicate the number of people who suffer from the disorders in the United States.

Lesieur emphasizes that the disease has brought her family closer together. She shares that father Bob and brother Corey, a student at Westport Middle School, are very supportive, whether it’s helping around the house or advocating to find a cure.

“Every day is a gift,” Madaline Lesieur says quietly. “There is no greater joy than having them around me.

“My daughter is role model. She has a lot of energy and a lot of love.”

During a recent family birthday celebration held at Not Your Average Joe’s Restaurant in Dartmouth, Lesieur shared the news about her project and advocacy with owner Steve Silverstein, who readily embraced the idea to hold a fundraiser at the eatery during National Eosinophilic Awareness Week, which runs May 19-25.

Impressed by Lesieur’s determination, the restaurateur agreed to host an event to benefit APFED.

Tonight, the restaurant will donate 15 percent of the cost of all meals purchased at the Dartmouth site by guests who present a special certificate to their server.

For more information or to download a certificate, visit the Web site: www.notyouraveragejoes.com, click on the button labeled “Dartmouth” and then go to “Not Your Average Cause.”

– Brian J. Lowney (source: southcoasttoday.com)

He bounces around the room like any typical 3-year-old full of energy. If it weren’t for his severe food allergies and eosinophilic esophagitis (EoE), an auto-immune disorder, he would seem like just another kid on a temporary sugar rush.

Yet sugar is one of the things Jackson Witte, son of Joel and Laura Witte of Peru, rarely gets to enjoy in typical kid-friendly foods.

His mother said she first noticed something was wrong when he would scream and cry as an infant. It wasn’t until he was old enough for solid foods that he started showing symptoms of food allergies.

“He’s had food allergies since his first bite,” she said.

The symptoms got worse and the Witte’s pulled the foods that were causing allergic reactions. That’s when Jackson’s height and weight plummeted on the child development charts.
Eventually, they saw a gastroenterologist and were able to get the diagnosis of EoE.

“They are two separate things but the people that have his condition tend to have food allergies as well,” she said. “The kids that are diagnosed with his condition, they do allergy testing.”

The auto-immune condition causes inflammation and damage to the esophagus. Since Jackson’s body attacks most of the foods children normally eat, he does have a feeding tube. Laura said they usually mix up a special formula, Elecare, that has been stripped of the proteins that Jackson’s body can’t handle. The formula is $35 a can and Jackson uses one every other day. His growth and development has improved but he still is on the lower end of the growth indicators.

Jackson also eats one food every day for three months. At the end of the trial, he goes back to the hospital for another endoscopy and biopsy.

“He was diagnosed about two years ago so we’ve been doing this for about two years,” she said. “Right now he can eat oats and corn and that’s it. He’ll never be able to eat a boxed food, there’s just too many ingredients. Pretty much his diet right now consists of oat milk, oatmeal, he loves corn-on-the-cob and we can do corn chips.”

The food trials are difficult for the family since Jackson may show signs of allergy or intolerance, but later the biopsy proves the food is not causing a reaction. Other foods that Jackson may tolerate well, such as apples, don’t cause any problems until the results of the biopsy take that food off the approved list.

Jackson can have sugar so his mother will make a type of sugar cookie with oat flour, oil and sugar. It probably won’t win any baking awards, but it’s one of the few treats he can eat. He already knows what he can and can not eat. Laura said he will pretend to read labels, setting aside things for his older brother, Dylan, 12.

Since eating causes physical pain for Jackson, Laura said it was only recently that she realized his slow speech development was related to the auto-immune disorder. She said a speech therapist explained many of the same muscles and skills involved in chewing and swallowing food are the same ones for speech. Now that Jackson has found a few foods to eat along with a trial food, he also is gaining in speech.

He may not say much, but he already knows his way around video game systems, his mother’s cell phone and the family computer. Laura knows he’s a very bright boy based on how quickly he will learn things.

But he rarely articulates a lot of his skills, another symptom of his conditions.

EoE is an auto-immune disorder estimated to affect more than one in every 2,000 people, mostly males. There is no known cure and treatment often is painful as in Jackson’s case with the trial food followed by a surgical procedure to determine his tolerance.

A recent study at University of North Carolina found there is a link between child growth and development when multiple food allergies are present. René Ficek, a licensed and registered dietitian at Illinois Valley Community Hospital, Peru, said the study was a very small one that should not immediately cause concern for parents.

“There’s so much confusion,” Ficek said. “What we see is parents starting to restrict foods.”
Current recommendations are for parents to introduce foods known for allergies between the ages of 4-6 months and then pay attention to the child’s reaction. Food allergy testing also can result in false positives so parents need to keep a food diary if they suspect their child may have problems. The diary should include the types of foods, any other ingredients and the symptoms.

“The only cure for food allergy is food avoidance,” she said. “But if it’s a rash, just keep watching.”
The top food allergens are milk, eggs, peanuts, tree nuts, fish, shellfish, soy and wheat. If a food is causing an allergy, don’t just remove that food. She said it’s important for parents to talk with a registered or licensed dietitian about substitutes for those foods in order to maintain healthy growth.

“It is important to get that good healthy fat in the diet,” she said. “If you just take it out and don’t replace it that could affect growth.”
Carolyn Sullivan, a nurse practitioner specializing in pediatrics at Peru Primary Care Clinic, said concerned parents should first talk to their health care provider if they have concerns. If incomplete nutrition is suspected, they can get an analysis done.

“It’s usually an evaluation of a child’s diet history, medical history, growth and physical exam, and if the provider feels necessary, some laboratory tests,” she said. “The dietary history usually looks at the quantity, quality and variety of foods that a child’s eating. It helps keep track of their intake and looks at any special or restrictive dietary habits.”

Even if a child is on the lower end of the growth charts, she said most children eventually will catch up with proper nutrition.

– Tamara Abby (source: newstrib.com)