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photos by JOSHUA S. KELLY | INDEX-JOURNAL

Haley Sylvester and her mother Laura laugh during an afternoon play session on Nov. 11. TOP:Haley plays with her toys.


When Haley Sylvester turned 3 on Nov. 19, her birthday cake was not a chocolate-and-vanilla confection adorned with her favorite cartoon character.

As the Sylvesters family celebrated the toddler's birthday, parents Laura, 36, and Richard, 37, and sister Hannah, 6, sang "Happy Birthday" to Haley over a plastic cake because Haley's body reacts violently after eating food.

"It's the only safe one (birthday cake) that she can have," Laura said.

Haley's reaction to food, which includes vomiting and diarrhea, is not as common or mild as a peanut or lactose allergy. A medically complex child, which means she has been diagnosed with several medical conditions, Haley has acute food protein-induced enterocolitis syndrome, also known as FPIES.

In other words, she is allergic to protein.

Because food makes Haley violently ill for lengths of time, her family does its best to ward off temptation.

During the holiday season, the Sylvester family avoided food-related activities such as building gingerbread houses and candy canes. When her mother reads books to Haley, she turns past pages focused on food such as The Polar Express'hot chocolate scene.

"We live in such a food-driven society that everywhere you go there are snacks," Laura said. "There are candies. There are crumbs."

As food is so ingrained into everyday life, the risk of Haley becoming ill is great. Under the watchful eye of her stay-at-home mother, who taught at Greenwood School District 50 and at The Sunshine House, and a full-time nurse Jennie Cameron, Haley plays like a 3-year-old in between her episodes of food reactions.

 

Journey to diagnosis

Born Nov. 19, 2012, at 5 pounds, 14 ounces and 18.5 inches, Haley was hospitalized two weeks later when her parents found blood in her stool. As doctors first suspected the Greenwood child was allergic to milk, Laura was put on a dairy-elimination diet while breastfeeding, but the bloody stools continued.

That first visit ignited Haley's long journey to an FPIES diagnosis. Because the syndrome is so rare, little information is available and the condition is difficult to diagnose.

Haley was hospitalized seven times before her first birthday for reasons including seizures and failure to thrive as her growth was little -- she weighed about 13 pounds at age 1, Laura said.

She underwent countless tests including an Echocardiogram, an abdominal ultrasound and two Electroencephalograms.

When Haley was about 6 months old, doctors gave her parents clearance to try solid food to help Haley grow. Laura said they put her in the high chair and took lots of photos in celebration of Haley's first rice cereal.

"Within 30 minutes, she was very sick," Laura said. Haley was lethargic and unresponsive. Her terrified family rushed her to a doctor who found Haley's white blood cell levels elevated. She was treated for a stomach virus.

Laura said the same thing happened again and again. Haley was hospitalized 12 times before her second birthday. The repetitive hospital visits created concern for Haley's living situation, and the Sylvesters feared the state would take Haley away.

"You have a fear of taking your child to a doctor too many times for symptoms they need treatment for," Laura said. "If there's nothing to be proven through a test, they don't know what to make of it."

With her little sister in and out of the hospital, Hannah's main concern was Haley not returning from the hospital.

Diagnosed multiple times with a stomach virus, Haley's constant stints in hospitals took its toll on her family.

"I began thinking I was losing my mind," Laura said. "It didn't make sense."

Although blood tests and traditional allergy tests cannot detect FPIES, Steven Gottlieb, a Greenwood allergist, introduced Laura to FPIES and explained how her younger daughter was allergic to protein. Haley was diagnosed with FPIES in June 2014.

With little information about the syndrome available, Laura said she knew she had to make sure Haley was not around food, which led to a "completely different lifestyle then anything I ever imagined."

Laura said she never dreamed of having a child who could not have cookies and birthday cake and "those things that are such fond memories from being a child, she can't even touch."

Weary of doctors who lacked knowledge of FPIES, Laura's search for a doctor who could help her younger daughter ended Oct. 16 when Haley met Dr. Karen Carter with Augusta Developmental Specialists.

Carter, who said she is not an authority on FPIES, said Haley is her first patient with the condition. Because Carter did not know much about the syndrome, she said she researched and learned about it in addition to working with a gastroenterologist.

"It's basically an allergy to food, but it's much more severe than the run-of-the-mill allergy," Carter said. "You truly can't be exposed to certain foods. With Haley, it's a lot of foods, so it makes it quite difficult for Haley and everyone around her to be able to live, basically."

 

Medically complex

For Haley, her FPIES diagnosis is but one bullet point on a list of medical conditions -- making her medically complex.

By her third birthday, Haley had been diagnosed with mild to moderate autism spectrum disorder, gastroesophageal reflux disease, acid reflux, failure to thrive, oral aversion, epilepsy, milk protein intolerance, Sandifer syndrome, gastroparesis, sleep apnea and periodic limb movement disorder among other diagnoses.

Laura said Haley's other diagnoses, especially autism, complicates her daughter's "multi-tiered" health as several conditions are related. For example, Haley's developmental delay ties in with FPIES and autism.

"The combination (of autism and FPIES) also can be a challenge because people with autism tend to get focused on certain things," Carter said. "If she gets focused on a certain thing that just is not healthy for her, then that could be a real issue."

 

Daily life

The Sylvesters' daily life has seen drastic change since Haley was born.

The kitchen storage space has dwindled as medicines and syringes fill up cabinets and drawers. Laura can't wear some makeup because some products contain protein. Even the bedroom Haley and Hannah share has been affected as IV poles and humidifiers surround Haley's bed and medical supplies are stored under Hannah's bed.

Going to church as a family is what Laura said she misses the most.

Laura said she was an active member of North Side Baptist Church before Haley's birth. Because children sometimes eat during a church service and snacks are served during Sunday School, Laura said she and her husband take turns taking Hannah each Sunday so someone can stay home with Haley.

"There's not really a place here that has the means to accommodate," she said.

As FPIES restricts Haley's ability to be around food safely at this point, Laura said people have drifted away from the family because they do not know how handle Haley's conditions. This has taken a toll on Laura.

"You have friends who disappear either because they don't understand," she said. "Not a lot of people are interested in play dates that don't have snacks. It's too out of bounds for a child to be allergic to protein."

When people do visit and interact with Haley, Laura said about 80 percent of Haley's food exposures and reactions stem from people who do not understand the importance of keeping Haley safe. Haley can eat anything from crumbs left on clothes to other children eating snacks, and Laura said Haley will find the food, eat it and become sick.

Reactions to food are delayed. Haley's cheeks "glow like they are sunburned," and she becomes lethargic during a reaction. She loses color in her face along with deep circles under her eyes while her stomach bloats. Laura said sometimes reactions can cause blisters that appear within an hour of ingestion.

"They're miserable for her," Laura said.

Cameron said projectile vomiting and bloody diarrhea come with reactions that can last for more than 30 days.

"She's a normal 3-year-old with autism. She's into everything," Cameron said. "Her personality is so beautiful. When she is sick, she is out of it."

Laura and Cameron constantly clean the Sylvester residence in Greenwood to make sure Haley will not find any crumbs. Laura said Haley can even get sick from touching food residue and then putting her hands on her mouth. They also monitor her to make sure she recovers after seizures.

The spotless house is one way Haley's family protects her, but Laura said it is a daily battle to help Haley understand that things, including food, that are considered normal would endanger her child's life.

"You can't put her in a bubble, but that's where she would be safe," Cameron said.

 

Via the pump

Although Haley's day-to-day life looks different than that of other 3-year-olds, she still must eat to survive.

The Sylvesters' kitchen stays secured with a baby gate so Haley cannot enter without supervision. Her food, PurAmino Hypoallergenic amino acid-based formula that costs about $40 a can, is the simplest breakdown of amino acids, which create proteins.

Haley's food travels through a backpack pouch and through a tube into her stomach, and she wears the backpack while she plays during four-day feedings. She also eats through the tube at night, which affects her sleeping.

"You're not made to eat while you sleep, but she has to be fed via the pump," Laura, who has been sleeping beside Haley's crib, said.

For a treat, Haley enjoys ice pops made from Pedialtye and distilled water, but her mother said being around Hannah, who eats treats, is hard for both children.

"It's very emotional to see her standing on the other side of the baby gate with arms reached out saying, 'Some,' and you cannot let her have that one taste," she said.

 

Bills, bills, bills

The complexity of Haley's medical conditions does drip into the Sylvesters' emotional and financial arenas.

As Haley takes more than 10 medicines a day and uses 36 syringes daily, medical bills are a common issue for the family.

With the help of Medicaid, Laura said the bills still pile up as two of Haley's prescriptions are more than $500 and feeding costs total about $13,000 a month. 

Laura said the family pays anywhere from $2,000 to $3,000 out of pocket a month.

But the hidden costs of doctors' visits are not always covered.

"Even Medicaid doesn't cover everything," she said.

Laura said driving to and from doctors' appointments in Greenville and Augusta takes a toll on financials. Haley visited Greenville eight times in October to see doctors, and Laura said gas costs about $65 a trip. As Carter's office is located in Augusta, that drive's gas mileage adds to the pile.

 

Sisterly love

While Haley's situation is different, it does not change the love of her family. Haley's older sister Hannah, who is in first grade, loves her sister even as she worries about Haley.

"She misses out a lot," Hannah said.

As both sisters grow, their bond grows stronger. When Haley is with Hannah, the younger one smiles more and lights up.

While Haley's condition does add stress to Hannah's life, she has found a way to relax and unwind through ballet.

"She (Hannah) stresses because Haley has been so sick," Laura said. "It's scary, and she doesn't understand. Ballet has been her outlet."

Hannah said she thinks about her sister while dancing.

Since Haley was born, Hannah's life has changed -- the family can only eat in the kitchen, there are no birthday parties, and Hannah and her mother can no longer go on ice cream dates in the summer.

"I'm really angry about it," Hannah said. "She is sick all day long."

With the addition of Cameron helping with Haley in the recent months, Hannah said she has been able to spend more time with her parents -- like what most 6-year-olds want.

But no matter her anger, Hannah said she and Haley are great sisters. Although only 6 years old, Hannah's trials have created a loving, selfless person.

This past Christmas, Hannah asked Santa Claus for three things: a cure for FPIES, a cure for seizures and for her mother to not cry at night when she prays and when Laura thinks Hannah is asleep.

 

Keeping with the norm

In some ways, Haley's childhood is drastically different than other children's, but she still experiences similar activities such as going to the dentist.

Because there might be food residue on books and toys in doctors' offices, Haley cannot play with them, Laura said, noting that medical offices still tend to be cleaner than Wal-Mart.

Laura said Haley tends to keep to herself when not at home because of her autism, but Haley kept calm during her dental checkup with Dr. Jennifer Turner of Pediatric Dentistry of Greenwood in December.

Her hands were splotchy from a recent reaction, but, like her sister, she had no cavities.

With the help of dental assistants Katie Jo Harris and Amber Christian, Turner was able to check Haley's gum erosion, which stems from her acid reflux, and enamel erosion, which Turner said she is following closely.

As Haley is one of Turner's first patients with food allergies, Turner said her office does take certain precautions with ingredients and methods.

"As we become more and more aware and familiar with her condition and as she's continued to grow, we learn more about the condition she has," she said. "We've had to kind of tailor the way that we treat her with her needs."

Turner said other patients have coloring and food allergies, although not as severe as Haley's, so the office keeps a stash of special fluoride and toothpastes to treat those children.

"Because it seems like allergies are becoming more and more prevalent in children, it's just something that we have here readily available for any child who may need it," Turner said. "We treat her like we would any other child her age."

 

A normal life

As rare as FPIES is, Laura constantly looks to educate herself and others on her younger daughter's condition, and she has succeeded a good bit.

At the Greenwood Mall while her daughters were talking to Santa Claus in December, she told Santa's helper about FPIES and what Haley faces. In the Sylvesters' neighborhood, the man who drives the ice cream truck gives Haley toys and stickers now because he knows Haley cannot eat the ice cream.

Carter said children with FPIES typically grow out of the syndrome, which the Sylvesters hope will happen with Haley.

"You have significant symptoms when you're younger," she said. "They improve over time."

In the meantime, the Sylvesters and Cameron seek to help the active and exuberant 3-year-old with the infectious laugh.

"She's such a delightful child," Cameron said. "Our goal is to get it to where her life is completely normal, and it can be with these early intervention therapies."

 

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Follow Haley's journey on Facebook at Prayers for Haley Sylvester.