What she does for love: Caring for her son who is losing his ability to walk and talk

Kenia Cutie moved to Miami in 2011 with dreams of strolling down the Miami shoreline with her son Charles Ktorza.

But soon after arriving, Charles, who has a condition known as Sanfillipo syndrome, began losing his mobility. More than a decade later, Cutie’s daily ritual requires her to carry her son out of bed and into a wheelchair. Outings, most often to medical offices, are a struggle as she must lift her now 22-year-old son out of that wheelchair and into a car.

The challenges that Cutie, 50, faces led caregivers to nominate her for the Miami Herald/el Nuevo Herald annual holiday Wish Book campaign.

“I immediately nominated her for the Wish Book because in one of our conversations, she told me ‘I cannot even take him to the beach, not to go inside the beach, but at least to get some breeze from the sea to enjoy the environment,’” said Nayar Arzuaga of Parent to Parent of Miami, a nonprofit community resource center for families of children and adults with disabilities. The organization, funded by the Children’s Trust, has worked with Cutie for more than a decade.

Cutie’s wish: a handicap-friendly van to enable her to maneuver her son to the doctor and other spots — including an occasional drive by the sea.

Arzuaga was assigned to help Cutie in 2021 by Parent to Parent. She is Cutie’s main support system. Their relationship transcends Parent to Parent of Miami.

“When I first met Kenia, she was struggling because she was extremely exhausted. She didn’t have time for herself. She couldn’t even take a rest,” Arzuaga said.

Although Cutie gets a helping hand from her 9-year-old daughter Chloe, maneuvering 22-year-old Charles into her small Hyundai from the fifth floor of her apartment complex is never easy.

Her car is not disability friendly. For each excursion, Cutie must fold back all the seats, haul her son into the car, then place the wheelchair inside at just the right angle for it to fit.

Sanfilippo syndrome: A rare, inherited disease

Recounting her move to Miami reduced Cutie to tears.

“I wanted to do a lot when I moved here,” Cutie said in Spanish, while Charles sat in his wheelchair in the next room. “It is difficult to see your son constantly degrading… I can guarantee it.”

Charles was diagnosed in 2007 with Sanfilippo syndrome, a rare inherited disease in which the body is missing or lacks certain enzymes needed to break down long chains of sugar molecules. As a result, the molecules build up in different parts of the body and cause various health problems.

Over time, children with Sanfilippo syndrome gradually lose their ability to talk, walk, and eat. Charles, first diagnosed at age 6, is no exception.

There is no known cure.

Charles watching cartoons on his TV. His mother must lift him out of bed and put him in his wheelchair.
Charles watching cartoons on his TV. His mother must lift him out of bed and put him in his wheelchair.

Kenia met Charles’ father, who is French, when she was a young woman in Cuba. In 1995, they moved to France. Charles Cutie was born in Paris in 2001.

Like other children with Sanfilippo syndrome, Charles did not show any signs of the disease at birth. He was a caring, hyperactive kid who spoke both French and Spanish before he was diagnosed.

Doctors told Cutie that Charles would not make it past adolescence. A typical life expectancy for a Sanfilippo patient is 10 to 20 years.

When doctors in France suggested that Charles be housed in a care facility, Kenia Cutie could not bring herself to do that, not then and not now.

In 2011, Charles qualified for a surgery that could potentially halt his decline, but it could not reverse everything the condition had already caused. Not every patient survives the surgery. Charles’ father was on board with the operation but there were risks Cutie did not want to take.

She denied approval for the surgery.

“He is not a test bunny and I did not accept it,” said Cutie. “My son has this disease and we are going to go through it with dignity.”

That same year, the couple separated. Charles’ father still lives in France, and calls occasionally, Kenia Cutie said.

After their move to Miami, Charles’ condition declined. In 2014, his legs failed. Speech became difficult. If his skin was exposed to the sun, he’d get rashes and could suffer third degree burns.

“Every day is full of stress,” said Cutie, who must juggle the demands of caring for Charles and daughter Chloe, a lively third grader.

“I get ready quickly. I shower, I take out Chloe’s uniform. Then I carry Charlie out of his bed and I give him a shower. Some days I have to use a cecostomy tube to remove his feces. From there I give him his purée and his yogurt. I quickly get Chloe ready and drop her off at school before 8:30.”

Even on the weekends, Cutie follows her strict routine, constantly monitoring his oxygen and heart rate. Every day, Cutie cleans her son’s mattress and leaves the house spotless.

Cutie and Charles before doctors diagnosed Sanfilippo syndrome.
Cutie and Charles before doctors diagnosed Sanfilippo syndrome.

Her full-time job is caring for her two children and holding down the household.

“It’s what I have to do for love,” said Cutie.

Cutie has developed her own health issues, suffering from osteopenia (weak bones), anxiety, panic attacks, and high blood pressure.

“Kenia is a great warrior,” said Arzuaga, whose organization supports her economically and emotionally. “I think that she’s the strongest person that I have met in my life.”


To help the more than 180 other nominees who are in need this year:

To donate, use the coupon found in the newspaper or pay securely online through www.MiamiHerald.com/wishbook

For more information, call 305-376-2906 or email Wishbook@MiamiHerald.com

The most requested items are often laptops and tablets for school, furniture, and accessible vans

Read all Wish Book stories on www.MiamiHerald.com/wishbook

This story is the product of a partnership between the Miami Herald and the Lee Caplin School of Journalism & Media at Florida International University

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