Where: Hobe Sound Community Presbyterian Church, 11933 S.E. Juno Crescent, Hobe Sound

Information: www.facebook.com/HobeSoundMOPSBenefitWalk

Hosted by: Mothers of Preschoolers Hobe Sound

Our culture is a food culture.

We Americans eat when we’re relaxing and we eat when we’re entertaining. We eat for birthdays, anniversaries, weddings and wakes.

Tyler Kenny is an all-American, Little League-playing boy.

But he cannot eat — not the way most of us can.

Last September, the 12-year-old was stricken by dull, constant pain in his stomach, abdomen and chest.

“We thought he was having appendicitis,” said his father, Tom Kenny.

Tyler looked pale. He had dark circles under his eyes.

His pediatrician sent him to a gastroenterologist, who discovered his esophagus was swollen shut. White masses were growing inside it.

“They told me they could not believe he had never gotten any food stuck,” recalled his mother, Tammy Kenny, a science teacher at Jensen Beach High School.

The white masses, it turned out, were made up of eosinophils (pronounced ee-oh-sen-uh-fills), a type of white blood cell that can trigger a host of disorders — including Tyler’s condition, eosinophilic esophagitis.

It is sometimes triggered by food allergies, so his doctors recommended eliminating the six most allergenic foods: milk, eggs, wheat, soy, fish and tree nuts.

“He was still in severe pain,” Tammy said.

They changed his medication, but the white masses only grew larger, an endoscopy revealed.

“What’s causing this, we have no idea,” Tammy said.

Tyler left David L. Anderson Middle School in October and started working one-on-one with a teacher through the Martin County School District’s Hospital Homebound program.

In January, when Tyler’s esophagus swelled shut again, he started an “elemental diet” of doctor-prescribed formulas and drinks. They don’t taste good, but they supply all of the calories, vitamins and minerals Tyler needs.

The alternative is a feeding tube, which Tyler and his family want to avoid at all costs.

Researchers at Cincinnati Children’s Hospital, where Tyler is seen every three months, are looking for treatments and cures for eosinophilic disorders.

But it’s a waiting game for the Kenny family. Tyler recently was allowed to add lamb back into his diet (it’s one of the least allergenic foods in the world), so he eats that for dinner most nights. As counterintuitive as it is, Dum Dum lollipops are allowed, too.

When I met Tyler at his home this week, he was sipping his chalky formula from a plastic cup. He drinks it almost all day long to ensure he gets the required 2 quarts.

The formula costs $1,600 a month and is not yet covered by his Florida Healthy Kids insurance. His parents hope that will change.

Tom Kenny was laid off from his job as an environmental scientist late last year. It was a financial blow to the family, but there has been a silver lining: It has allowed him to be home with Tyler on the bad days.

And there are bad days.

“We just hope the good days outweigh them,” said Tammy, a breast cancer survivor who has been in remission for eight years.

Tom and Tammy have three other sons, ranging in age from 3 to 14. The family is quick with a good-natured joke — even if it’s about the awful taste of Tyler’s formula. It’s part of how they cope.

The other part is faith.

“Sometimes it’s so overwhelming it’s hard to breathe,” Tammy said.

But they get by.

“I have to give it to God,” she said.

Tyler thought for a long time when I asked him how he copes.

“Don’t think about it too much,” he finally said.

He has one request for his June 8 birthday: no cake.To help the family with Tyler’s medical expenses, Mothers of Preschoolers in Hobe Sound is hosting a fundraiser 10 a.m. Saturday at Hobe Sound Presbyterian Church.

Yes, there will be food – but Tyler actually is looking forward to it. He’s going to run a “tasting station” at the buffet table.

Before people fill their plates with hamburgers and hot dogs, he wants them to have a sip of his formula.

It will be a small taste of his reality.

– Eve Samples (source: TCPalm)

Matthew Luisi is allergic to food.

Four-year-old Matthew Luisi of Cedar Grove shows off his gastrointestinal tube while dad Felix attaches the equipment which feeds him a dinner of specialized liquid formula.

Popular childhood treats such as macaroni-and-cheese, chicken nuggets or cookies are lethal to the 4-year-old boy from Cedar Grove. Eosinophilic Esophagitis, a disease unknown to most people, is to blame.

Matthew’s 6-year-old brother hides in the bathroom to eat Doritos because he doesn’t want to make his little brother jealous.

His mother Marta leaves birthday parties early – before the pizza and cake are served – because when Matthew sees the other children eating, he begins to cry, desiring to do the same. And everyday, Matthew leaves class in order to visit the school nurse, where he is fed a special liquid formula via his gastrointestinal tube, hooked up to a slow-drip dispenser. If the bag of liquid drips into Matthew’s stomach too quickly, he becomes nauseous. Matthew is fed that way four times a day, stuck in a chair for 40 minutes each time, unable to move around while his stomach is connected to the dispenser.

“You live it. You don’t have a choice,” Marta said of how her family copes with Matthew’s illness. “I saw a woman on ‘Anderson Cooper’ whose son has the same disease, and it sounded so horrible. I got teary-eyed. But then I realized, Matthew has the same story.”

The third week in May, upon us today, is National Eospinophil Awareness Week. Citing their son’s misdiagnoses and how very few doctors specialize in eospinophil-related disorders, Matthew’s parents hope to shed public light upon his condition in order to help other families.

Eosinophilic Esophagitis experience

Matthew gets debilitating stomach pain after he eats, caused by eospinophils – white cells that attack bodily threats- multiplying in his esophagus and small intestine. Both become severely inflamed as a result of the cells’ attack, with each episode causing scar tissue to form in the boy’s little body. Scar tissue that builds up over years can turn cancerous, according to Marta.

With his autoimmune system in high gear, Matthew often becomes tired and achy, and due to his discomfort – aggressive, his parents said. Because of his poor nutrition, Matthew broke his foot a few times and sees an orthopedist regularly.

Making the management of his disease all the more difficult is the boy’s autism.

“He doesn’t know how to tell you he doesn’t feel well,” Marta explained.

“If you ask him a question, he may answer you, or he may repeat something from ‘Spongebob,'” added Felix, Matthew’s father.

As a newborn, Matthew consistently vomited after breastfeeding. At two weeks of age, a gastroenterologist misdiagnosed him with acid reflux.

Matthew was diagnosed with autism at 15 months of age, at which point doctors believed he was vomiting and picky about food because he was hypersensitive to the foods’ texture. Matthew spent an entire year undergoing autism-specific feeding therapy to no avail.

The toddler “fell off of the weight chart,” spent lots of time crying and crouched over furniture, and began passing blood in his stool, Felix explained.

Finally, a few months after his second birthday, a doctor ordered an upper endoscopy test for Matthew – wherein a patient is put under anesthesia so that a camera and biopsy knife may be hosed down the esophagus and into the stomach and small intestine.

With pictures and samples of Matthew’s insides in hand, a doctor finally discovered that he suffered from Eosinophilic Esophagitis.

The Luisi family has found only two doctors who specialize in Matthew’s condition, one being in Cincinnati and the other in Philadelphia. Choosing the closer of the two, Matthew was admitted to the Children’s Hospital in Philadelphia and remained there for two weeks for various testing. A nasal-gastric tube was inserted and for four months, Matthew was allowed to eat nothing but formula filtered into his nose and DumDum lollipops – which are allergy-free.

What now?

Because Matthew kept pulling the tube out of his nose, he eventually had a gastrointestinal feeding tube surgically inserted in his stomach.

“He doesn’t know life without his GI tube,” Marta said. “He doesn’t want to take it out when it’s time to change it every three months. It’s a part of him.”

“He doesn’t know life without his GI tube,” Marta said. “He doesn’t want to take it out when it’s time to change it every three months. It’s a part of him.”

Whereas some people with Eosinophilic Esophagitis cannot eat any food, others can digest a few foods. Discovering what Matthew can or cannot eat has been his doctors’ and parents’ focus since his diagnosis in late 2009. There is no one test wherein all the foods he is allergic to can be discovered, according to Felix.

As such, for three months at a time, Matthew eats only four foods in addition to his liquid formula. At the end of the three-month period, the family heads to Philadelphia and Matthew is put to sleep to undergo another endoscopy and biopsy. If his insides don’t look or test well, the food he ate for three months is put on his blacklist, and the process repeats.

“All of the anesthesia – we worry about it,” Marta said. “The minute we turn the corner in Philadelphia before the hospital, he starts yelling ‘I’m not sick.’ When they put the mask on his face, he goes berserk.”

So far, the only foods which Matthew can safely ingest are turkey, apples, sweet potatoes, pears and carrots. Chicken, tomatoes, wheat, rice, soy, milk and eggs are among the foods he must avoid. Potato and berries are next on his list of foods to try. “I’ve met moms who, 11-years later, have no safe foods for their child. We’re on the luckier end of the scale,” Marta said. “But two years later, Matthew definitely doesn’t have enough foods to survive on. And having only five or so foods he can eat, sometimes he just doesn’t want them. How many ways can I make turkey?”

Being a kid

“Just because he looks normal doesn’t mean he lives a normal life. People don’t understand. It’s hard,” Marta said. “I don’t expect friends to get it because our own family doesn’t get it. They ask, ‘What do you mean he can’t eat? Why?'”

Watching Matthew zip around the family’s Cedar Grove home – a big smile on his face, a superhero cape on his back, and an eagerness to chat and play with others – one would never believe he has any medical difficulties.

He asked a Times reporter to play dinosaurs and superheroes with him and proudly jumped around the room and onto the reporter’s back when his Incredible Hulk figurine won a battle against her tyrannosaurus.

“He wakes up everyday in a good mood, whether he’s Matthew or the Green Lantern,” Marta explained.

His academic abilities are also stellar, she said, and such was evidenced by his ease with a laptop computer. During his 40 minutes on the formula pump, Matthew used the computer to pull up games and websites for various cartoons. He also proudly announced, and properly pronounced, the name of his disease while flexing his muscle and showing off his feeding tube.

“Right now, Matthew is contained in his own little world, attending a special disabled pre-K class. But when he’s in the fourth grade … or his friends want to go to a pizzeria,” Marta trailed off. “At what point is he going to be embarrassed?”

For now, at least, Matthew is the opposite of embarrassed, helping Marta and Felix spread the word about his condition.

“If we can help just one mom,” she said. “There’s no money to research a disease that hardly anybody has,” Felix added.

For more information about Matthew’s condition, visit www.apfed.org.

“If we were other parents, we’d have given up,” Marta said. “Go with your gut. If you think your kid is sick, your kid is sick.”

– Maria Karidis (source: NorthJersey.com)

Riley is 3 years old, with giant blue eyes and a joyful smile. Like many little girls, she loves princesses. Riley’s parents speak in earnest about her boundless energy and her cooperative, loving demeanor. She dances and does gymnastics, gives ample hugs and kisses, and is normal in most every way. What she can’t do, however, is eat food the way other children can.

Riley has a medical condition called Eosinophilic Gastroenteritis, which means she is severely allergic to almost every kind of food. It is a rare condition; so rare, in fact, that it took over a year of extreme physical and emotional strain on Riley and her parents before she was diagnosed.

And that is precisely the problem.

Although diagnosis of the disease has grown rapidly in the last ten years, perhaps because of increased medical knowledge, much awareness is still lacking, according to the American Partnership For Eosinophilic Disorders, a non-profit organization.

In response, Riley’s friends and family are hosting a benefit run to raise awareness and research funds for the organization.

If you had met Riley during the first year of her life, you would have met a very different girl from the one she is today.

“When she was born, the first 15 months of her life were confusing and frustrating,” explains Riley’s father, Mike Kahn. She was miserable a majority of the time, would scream for hours and sleep very little. She had trouble gaining weight, and was clingy, irritable and clearly in pain.

Doctors kept diagnosing it as common GI issues, like reflux, and said she would grow out of it.

“It’s ingrained in my mind, sitting in the doctor’s office, and we’re just beat up emotionally, and the doctor saying, ‘You guys just gotta stick with it, this is difficult, but it’s going to go away.’ My wife and I just looked at each other, wondering if we were crazy,” Kahn says.

Doctors were confident things would improve when Riley could sit up, but they didn’t. They said once she could walk, things would be different. Then she walked, and things still weren’t any different.

Feedings continued to be a losing battle.

Riley’s mother, Jill Kahn, describes the first five months spent nursing Riley as a complicated struggle.

“I would be in the nursery trying to feed her almost all day long, and after a two-hour feed, she would projectile vomit it all up and be totally inconsolable,” she says.

The doctors told her to keep trying.

“They didn’t know she was allergic to everything I was feeding her, even though I cut my diet all the way down to just sweet potatoes and turkey. I was almost starving myself to find what was causing the problem, and we were getting nowhere,” Jill says.

The Kahns knew that something was not right.

“When you’re a new parent, you kind of think that everyone else knows the answers better than you, especially when you’re talking to doctors; but the confusing part was thinking it just feels like something else was going on,” Mike says.

He says they felt like they weren’t being listened to, so Jill began to do more research. When Riley was 17 months old, a scope was finally done to determine what was really going on. The procedure involves sending a camera down the child’s esophagus, while at the same time taking a tissue sample for biopsy.

What the doctor saw worried him. There were white rings of extreme irritation on Riley’s esophagus and lesions on her intestines. The Kahns feared what, in their mind, was the worst – the idea that Riley might be allergic to gluten.

“I remember thinking ‘How can you live without wheat, that’s going to be incredibly difficult,” Mike said. After the biopsy was sent to California to be tested, the conclusion was far more troubling.

Riley’s condition comes in various forms and severities, explains Julie Springer, national fundraising coordinator for the non-profit organization APFED.

Riley’s Run”The problem with this disease is that it’s very individualized. Some people have it very minor, some have it very severe,” she says. She adds that about one in 1,000 to 2,000 people have the condition, and although it is on the rise, people often have trouble locating a doctor who will diagnose or who can treat it because of its rarity.

Once they had the answer, Riley’s parents had to look at ways to manage the disease.

“We went from thinking we were going to have to cut out wheat, to having to cut out everything,” Jill says. They had to switch entirely to a formula food for Riley.

However, the formula also posed challenges – it tastes and smells terrible, Mike explains. With that factor, as well as the early full feeling people with the condition experience, it was a challenge to get Riley to eat enough of the formula to meet her required nutrient levels.

They tried everything, even attempting to feed her while she was asleep, which could only happen in the car. But that wasn’t enough. They then fed her through a nose tube because they were initially terrified of committing to a stomach tube for Riley.

“Everyone thinks, ‘It cant be our child,” Mike says.

For a child, the nose tube is more uncomfortable, and, as you can imagine, difficult to manage. Jill adds that she had to reinsert it once while at a restaurant.

It wasn’t until they had a second scope done and saw how the formula had allowed Riley’s intestinal irritation to clear up, as well as seeing the complete shift in her personality, that they knew this was a long-term issue and that a stomach tube would be the best way to go.

“Once we got her diagnosed and stopped feeding her things that were hurting her inside, she was a totally different child,” Jill says.

“We saw the light in her eyes that’s there today. She’s happy and growing. Before, we thought we could never use a feeding tube, but then we saw the change in her. It’s just our life now, it’s not so crazy and abnormal, because the benefits have just been unbelievable,” added Jill.

Still, the management of Riley’s condition has to be worked down to a science, Mike explains. He attributes an iPhone app to helping schedule eight to ten different medicines for her. She has a Mic-Key button in her stomach that allows a feeding tube to pump the formula from a small backpack four times a day and during the night.

Mike emphasizes that social activities must be altered, as well – Riley is unable to eat the birthday cake and pizza at other children’s birthday parties; and when they go out to eat, they give her a plate of Sonic® ice, which keeps Riley from forgetting how to eat.

“We’ve been to Sonic at least four times a week for the past two years,” Mike laughs. In addition to the ice, Riley has three safe foods she can eat – sweet potatoes, carrots and a certain kind of potato chip. The difficulty in testing new safe foods is that a bad reaction can set her back for weeks. However, the process should get easier as Riley gets older, Jill explains.

She compares the continuous care Riley requires as similar to that of a newborn child, but overall, they make sure Riley leads as normal a life as possible.

Mike echoes this sentiment, and explains that the idea of the race was somewhat difficult because they knew they would have to talk a lot about Riley’s condition.

“We’re not ones to complain about this issue at all,” he says. “We’ve dealt with it and made the best of it. It’s not going to define us, it’s not going to define her, we’re going to try to live a normal life and be grateful for everything that we have, even if it’s just three foods.”

It was the importance of awareness of the condition that made them act. Mike explains that more awareness means more research, which could lead to a cure, or at least better treatment options.

Springer agrees to the value of events like Riley’s Run in raising awareness about the condition.

Riley’s RunThe 5k race, which was organized by Mary Catherine Sexton, a Kahn family friend, will be held at Oakdale School in Edmond on June 16. Along with inflatables, princesses and activities for children, there will be a 1-mile fun run and sleep-in (non-run) option.

Such a run seems appropriate for a little girl like Riley, who has been triumphing in her own race since she was born.

– Lindsay Whelchel (source: Distinctly Oklahoma Magazine)

WASHINGTON (FOX Carolina) –
Most 6-year-olds don’t lobby Congress on important health issues.

However, Giles Martin Schanen III, or G3 as he’s called, isn’t your typical 6-year-old.

During a visit to Washington on March 27, G3 talked to Senators Jim Demint, Lindsey Graham, Congressman Trey Gowdy and others about a disease he suffers from: eosiniphilac esophagitis.

Because of EE, as it is also known, Schanen has allergic reactions to every food except milk, wheat, beef and pork.

“I had a wonderful time visiting with Giles,” said Gowdy. “He has tremendous courage and I told him we needed people like him in public service. He went on the floor and voted for me and met 15 to 20 of my colleagues. I talked with his parents about how to bring increased awareness and funding to the condition he suffers from and we have a plan in place on how to do that.”

There is no known cure for EE, and right now there is no FDA approved treatment for this obscure disease that affects 50 people out of every 100,000.

Through all the pain, the allergy testing and endoscopies, Giles continues to focus on the positive things in his life. For example, he just built a 2,000-piece Lego tower, and he’s a big fan now of NASCAR Nationwide series driver Jeremy Clements of Spartanburg, since he’s racing to raise awareness about the disease.

– Trent Butler (source: Fox Carolina)

TUCSON, AZ (Tucson News Now) –
Imagine never knowing the taste of pizza or a hamburger. A growing number of kids are experiencing a rare disease that causes them to get sick if they eat most foods, and conditions in Arizona may be causing more cases.

It’s called Eosinophilic Esophagitis, or EE. Two-year-old Patrick Howe of Tucson has the disease makes you allergic to just about every food.

“Crumbling over in pain, screaming bloody murder, vomiting,” describes his mother, Erin Howe. She says Patrick’s already allergic to several foods, but she’s still learning which foods makes him sick.

“He has a hard time eating anyways so we’re not sure if there are a lot more things that he’s allergic to or that cause inflammation.”

It’s a disease that affects more than one in two thousand people with cases increasing up to tenfold in the past ten years. Doctors are now diagnosing EE at a higher rate especially in Arizona where our environmental allergens can affect someone’s sensitivity to certain foods.

“Those cross-react with food allergens and cause the disease,” says Dr. Fayez Ghishan, chairman of UA Pediatrics.

The thing that makes EE unique is the number of trigger foods and delayed reaction to those foods. Eating the wrong thing can make a child very sick and send to them hospital, so they can only eat amino acids, a food element.

“That doesn’t taste very well so you either have to put the tube in the nose or in the stomach,” says Ghishan.

Patrick gets by on pricey mail order formula and special ten dollar box drinks. He’ll never know what normal food tastes like.

Experts say cases where kids will have to be fed through a feeding tube are rare. The disorder can generally be treated through topical steroids.

– Carissa Planalp (source: Tuscon News Now)