A Life's Story

July 17, 2021

A fighter from the get-go

Son's unique health challenges inspired mom's ingenuity

By: Kevin Rollason

<p>Demitri Musaphir, with mom, Majda Ficko, died in March from complications due to Cornelia de Lange syndrome. He was 23 years old.</p>

Demitri Musaphir, with mom, Majda Ficko, died in March from complications due to Cornelia de Lange syndrome. He was 23 years old.

Demitri Musaphir was loved by his family and a ray of sunshine for those around him, but what he will be remembered most for is the butt rash cream his mother devised originally just to help him, but which is now helping many others.

Baby Butz may not have Demitri’s name on it, but his mother says it will be his lasting legacy.

That’s because Musaphir, who died at age 23 on March 9, of complications from Cornelia de Lange syndrome, was like many children and adults who are severely physically disabled: he was incontinent and suffered recurring diaper rashes and infections which saw him in and out of doctors’ offices and hospitals many times through the years.

His mother, Majda Ficko, was frantic to find something that would protect her son’s skin.

Ficko, a hairstylist who owns The Hair Do Zoo, was already familiar with chemists because she was working on creating her own line of shampoos and hairstyling products when her son was born in 1998.

Ficko said she was finding several of the diaper creams on the market not only didn’t help her son, but made the rash even worse.

"The creams that didn’t work, heal or protect, were mostly made of oils and waxes and the ones that hurt my son or made his rash worse contained alcohol, chemicals and perfumes," she said.

That’s when Ficko went to a chemist, as well as doctors and pharmacists.

"The most valuable information came from a doctor who worked in a hospital burn ward," she said. "Most people don’t realize that diaper rash is actually a chemical burn."

It took two years, with Musaphir as her test subject, until she came up with Baby Butz.

What Ficko created is now used in hospital NICU wards across North America and is licensed by Health Canada and registered by the United States Food and Drug Administration.

Ficko said the cream is 100 per cent natural and not only prevents diaper rashes, but immediately stops the pain from them and speeds up the healing process.

"I never intended to sell the cream — I only made it to help my son," she said.

But she changed her mind when a doctor at the Children’s Rehabilitation Centre suggested she market the cream to benefit others in Demitri’s situation.

When Ficko tried to register the product as Baby Butts she found it was too generic, so she opted for a ‘z’ in the name because of the cream’s high zinc content.

Creating a cream wasn’t on the horizon when Demitri was born two months premature after an emergency caesarean delivery. He weighed only two and a half pounds and doctors didn’t think he would last the night.

"From the get-go he was a fighter," said Ficko. "By the second week they kicked him out of NICU."

Due to his diagnosis of Cornelia de Lange syndrome, Musaphir could only eat through a tube, he couldn’t walk or talk, and he needed to be cared for 24-7.

"He was my forever baby," said Ficko.

Musaphir grew up to go to school — he went to Maple Leaf School until Grade 5 and then Robert Andrews School for Grades 6 to 8, and then River East Collegiate until he turned 21.

After graduating, Musaphir began going to the Com-Span day program for adults living with special needs.

Dr. Janet Grabowski, Musaphir’s pediatrician, said Musaphir’s medical issues meant he had to be fed through a tube directly into his stomach during the day but also overnight.

"I will always remember Demitri because he was so sick," said Grabowski. "We didn’t think he would make it and then he did. He survived and thrived.

"He really became the light of his family’s life."

But Grabowski said whenever she saw him in her clinic she would find he was having problems with his skin.

"Because of his feeds overnight, he had a wet and dirty diaper every morning and was getting very significant rashes," she said. "None of the typical diaper rash creams helped him.

"The cream Demitri’s mother developed, however, kept the skin in his diaper healthy. Since she began using it, Demitri never came in with a diaper rash."

Grabowski said that’s why she continues to recommend the cream to her patients long after she was Demitri’s doctor.

"He was just the cutest little guy," she said. "He was a beautiful little guy. And he had such beautiful eyes."

But while the cream stopped the pain Musaphir felt on his bottom, doctors couldn’t stop the pain he felt in his stomach, which ultimately resulted in his death. Many children with the syndrome have stomach and intestinal issues and he was plagued with having digested food enter back into his stomach from his intestine. He also had a deformed heart and only one kidney.

Ficko said just days before his death her son was prescribed antibiotics to fight an infection, like many times before, but this time he died. His mother found him in his bed at home.

"Demitri had a strong soul and he truly was a miracle to live as long as he did," said Ficko. "My sadness and regret was that he was in pain before he passed and that I tried but couldn’t do anything to help."

But, while Musaphir lived, there was one thing he loved most.

"Demitri loved music — especially when Grandma held him while she sang," said Ficko. "He just stopped moving and melted. Every morning to help settle him during bath time I would sing You Are My Sunshine."

His mother said Demitri touched many people who helped him through his journey through life.

"He was such a sweet boy and, because of his syndrome, he never was angry or mad," she said. "He had two emotions, either happy and content or in pain."

Ficko is glad public health restrictions to prevent the spread of COVID-19 allowed her to have more time with her son than she otherwise would have had.

"I was able to spend the last year of his life with him exclusively," she said. "It was just me and my family together and he was at home in his own bed when he passed away.

"I believe he was born to me so I could help not only him, but now many babies, children and adults."

kevin.rollason@freepress.mb.ca

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