'Fancy and full of life': Esther's Friends supports families of hospitalized children

  • Monica and Tim Frey of Lincoln Park with their children, Billy and Esther. The Freys started a foundation called Esther's Friends in honor of their daughter, who passed away from a rare genetic disease in June of 2020.

    Monica and Tim Frey of Lincoln Park with their children, Billy and Esther. The Freys started a foundation called Esther's Friends in honor of their daughter, who passed away from a rare genetic disease in June of 2020. Courtesy of the Frey family

 
 
Updated 11/21/2021 9:20 AM

Esther Viola Frey never knew a stranger. She always had a smile on her face and, by all accounts, she was a force to be reckoned with.

Her strong spirit made up for her physical weaknesses caused by a rare genetic disorder.

 

Esther was born prematurely in March 2018. Her mother, Monica, said that her water broke at 28 weeks.

"We were really worried because she was so small," Monica said.

The goal was to get her to 34 weeks before giving birth, and Esther, a fighter from the beginning, made it to exactly 34.

"That's when she was born. They had to induce me," Monica said, adding that Esther weighed just 3.5 pounds at birth.

Esther Frey reads a book during one of her many stays at Lurie Children's Hospital. The Freys felt fortunate they were able to spend time with Esther while she was in the hospital.
Esther Frey reads a book during one of her many stays at Lurie Children's Hospital. The Freys felt fortunate they were able to spend time with Esther while she was in the hospital. - Courtesy of the Frey family

Esther was born with a collodion membrane, which Monica described as like a plastic all over her skin. At first, doctors thought she might have ichthyosis. According to the Mayo Clinic website, this is "an inherited skin disorder in which dead skin cells accumulate in thick, dry scales on the skin's surface."

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Doctors at Prentiss Women's Hospital in Chicago, where Esther was born, worked to keep her skin moisturized while she spent 6 weeks in the NICU.

In the meantime, the membrane naturally sloughed off and Esther's skin looked typical.

"Everyone was really confused, so they took her blood to Mayo for a diagnosis," Monica said.

Doctors finally ran an extremely rare test that discovered the final diagnosis -- trichothiodystrophy, or TTD.

According to the National Organization for Rare Disorders (NORD), trichothiodystrophy is a rare, inherited genetic disease. Patients share the common feature of short, dry, brittle, sulfur-deficient hair, which has a characteristic tiger tail pattern. It can be found under polarizing microscopy.

Esther Frey always had a smile on her face, even through all of her doctor's appointments and therapy sessions for a rare genetic disease.
Esther Frey always had a smile on her face, even through all of her doctor's appointments and therapy sessions for a rare genetic disease. - Courtesy of the Frey family
                                                                                                                                                                                                                       
 

That's how doctors finally diagnosed Esther.

"It is extremely rare," Monica said. "There have been only a little over 100 known in the world ever."

According to NORD, typically, patients are born preterm and with low birth weight. Like Esther, infants may be born with a shiny parchment-like covering on the skin that peels off over several days to weeks.

As they grow, there may be developmental delays or intellectual disabilities, short stature with poor weight gain, dry, scaly skin and eye abnormalities.

The website also says that nearly half of patients with TTD have extreme sensitivity to ultraviolet radiation (UV) called photosensitivity and develop blistering burns on minimal exposure to UV.

Monica said Esther showed many of these same symptoms. They put Aquaphor on her body every eight hours to keep her skin moisturized.

She had a feeding tube put in to giver her extra nutrients, but a dairy allergy even made that difficult. Esther never weighed more than 13 pounds.

What was most important to Monica and her husband, Tim, who grew up in Arlington Heights and still has many family members there, was to give Esther as happy a life as possible. "We didn't want to bubble her," she said.

According to Monica, Esther always had a smile on her face, even through all of her therapy sessions, doctor's appointments and multiple hospital stays at Lurie Children's Hospital.

"She had a way about her," Monica said. "People did like her, and they would bring her presents. A custodial member brought her a light-up toy once. He thought she had a beautiful smile."

"She loved being fancy. She had her little purse and a fake tube of lipstick that she always pretended to put on," said Monica Frey of her daughter, Esther, who passed away in June 2020.
"She loved being fancy. She had her little purse and a fake tube of lipstick that she always pretended to put on," said Monica Frey of her daughter, Esther, who passed away in June 2020. - Courtesy of The Frey family

Despite not being able to speak, Monica said Esther always found a way to communicate and let her personality shine through in a variety of ways.

"She loved being fancy," Monica said. "She had her little purse and a fake tube of lipstick that she always pretended to put on. She liked to pretend she was drinking coffee, and she loved the raw tuna out of the sushi rolls."

She even loved music. Her band of choice?

"Nirvana," Monica said laughing.

She loved spending time with her brother Billy, 5.

"They had a great relationship. It was so cute to watch," Monica said.

Esther's weakened immune system and slow growth finally took a toll.

"Esther did really well the first year, year and a half," Monica said. "But she just couldn't grow enough and her body couldn't take it."

Esther passed away in June of 2020.

Esther's Friends

Monica and Tim Frey, who live in Lincoln Park, wanted to do something to keep Esther's memory alive.

"Her life was short, but impactful and meaningful, and we wanted to match that," Monica said.

Esther spent many nights in the hospital, and the Freys were fortunate that one of them could always be with her. But they also saw that a lot of families were not in that same situation.

"It was heartbreaking to see that these kids were going through something so difficult but they didn't have that same comfort or support," Monica said. "We were able to have that time with her, which made a huge difference for her."

They decided to start Esther's Friends, a 501(c) 3 charity to raise money to give families who have kids in the hospital a little extra support.

Started in November of 2020, the foundation began operating in 2021, with its official nonprofit status established in September. For the most part, so far Esther's Friends has raised money through individual donors, primarily through a network of friends and family, Monica said.

But they have done small virtual events, and in the spring are partnering with a school to hold a walkathon.

Monica and Tim Frey wanted their daughter Esther to live life to the fullest despite her rare genetic disease. "We didn't want to bubble her," said mom Monica Frey.
Monica and Tim Frey wanted their daughter Esther to live life to the fullest despite her rare genetic disease. "We didn't want to bubble her," said mom Monica Frey. - Courtesy of The Frey family

"Hopefully we can do a bigger run or walk at some point. We will see what works and what doesn't," Monica said.

The Freys use social media as much as possible and send out a newsletter that they are hoping to grow.

While it is still new, the organization has already made a huge impact.

They have partnered with Lurie Children's Hospital to fund a parking pass for Pediatric Intensive Care Unit families for the next four years. Funds also support the position of a Child Life Specialist in the PICU for one year.

"That is a big thing for us," said Monica. "It is a person who is actually there to spend time with the kids, talking to them and playing with them when no one can be there. This is a position the hospitals might not have a budget for, so it saves them money."

They've also given money to Loyola Medicine Children's Hospital to create the Esther Viola Frey Patient Support Fund to meet the needs of patients and their families suffering from financial insecurity.

They've paid for a Rainbow Animal Assisted Therapy dog to visit children at Lurie Hospital. Eva, who is 7 months old, -- coincidentally born on March 20, which is Esther's birthday -- is in training now.

The foundation also provides comfort care kits for Comer Children's Hospital that include basic hygiene materials, activity books, games, fuzzy socks, blankets, a journal, and a meal voucher and parking pass.

And then there are the books. Rush University Children's Hospital now has a Purple Library -- Esther's favorite color -- that provides books for inpatients to keep and take home.

"We don't sit on the money. We are always buying books. We hope to buy more adaptive toys that the Child Life Specialist can use to play with the kids. Kids with special needs can't always just play with toys off the shelf," Monica said. "Esther had special toys she would use during therapy, and she always had a sense of accomplishment when she played with them."

Monica said the main goal of Esther's Friends is to give the hospitals what they need and to help families.

"We don't want to be a square peg in a round hole. We want to be a round peg in a round hole. We want to give them what they need," she said.

The Freys want to make an impact on other people's lives and to support as broadly as possible. Mostly, they want to make sure that Esther's life continues to make a difference.

"She was fancy and full life," Monica said. "We want kids to know that Esther will always be their friend."

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