6-Year-Old Girl Ages with Enormous Speed Due to Syndrome No One Else in the World Has & Doctors Can’t Define the Illness
When a couple found out they were pregnant, they didn't anticipate anything going wrong during the birth of their child. They didn't expect to have a baby girl with the Benjamin Button condition of aging quicker than normal.
Isla Kilpatrick-Screaton was born with a condition that made her look older than her six years in February 2023. The little girl was welcomed on February 2, 2017, weighing 5lbs 10oz, and almost suffocated after being born at 36 weeks in Leicester Royal Hospital.
It took a month-long hospital stay before her parents, Kyle and Stacey, could take her home. However, soon after her departure, she turned blue and had to be rushed back to the hospital for treatment.
The little girl was resuscitated after having an emergency operation at three months old. Doctors deduced that her tiny tongue blocked her airway whenever Isla was upset, and months after her birth.
In October 2017, the little girl was diagnosed with mandibulofacial dysostosis. The condition caused abnormalities involving the skin's coloring and bone development.
Stacey had to leave her teaching assistant job to be a full-time caretaker of her second child. She admitted that it took a lot out of her family. A genetic consultant told them that their daughter was the only one worldwide who had that specific misspelling of the gene, which caused the mutation, before adding:
"We were light-heartedly told to 'get Googling.'"
Isla's mother noted that while the rarest conditions had carers networks, she and her partner didn't. The little girl's condition began before her birth, and because of the rapid aging of her cells, it was known as the "Benjamin Button disease."
The reference was to the character by the same name in a 2008 movie who was born an old-looking man and aged backward to infanthood before dying.
How Stacey and Kyle Fought for Isla's Life?
Stacey and her partner had to battle for their daughter's life. Stacey revealed that when Isla was born, and the umbilical cord was cut, the little girl couldn't maintain her oxygen levels above 60 percent when it was required to be 90. Nurses fought for what felt like hours, trying to keep the infant's airways open.
Kyle's partner shared how they'd anticipated being able to see her, but Isla was taken to neo-natal intensive care. The mother of two recalled how overwhelming and traumatic it was for her and her partner that they fell asleep.
When the couple awoke, their daughter wasn't around. The little girl's mother confessed that she nearly died as it seemed she was fighting against any measures the medical staff tried to implement to save her life.
The young girl, who seemed to age backward, was incubated and placed in an induced coma for the first five days of her life. Stacey recalled how she and Kyle couldn't hold their child, and their other daughter, Paige, then 5, was prevented from seeing her younger sister to protect her.
Nurses fed the little girl as she lost weight and spent two weeks in intensive care before her family could take her home. Isla had to be bottle-fed through a nasal tube to keep her fed and alive.
Six days after being taken home, her parents had to call an ambulance when she started sputtering, choking, and turning blue while being bottle-fed. One of her parents stayed on the phone while the other did CPR.
Stacey said it was an awful experience for their oldest child to see. At the hospital, Isla's airway was cleared, and she stayed put for two weeks, and it was twelve weeks later that she had to be taken in again for trouble breathing.
Kyle's daughter's genetic tests were done the month she was born before her diagnosis was given. However, because no one else had the mutation gene that caused Isla's deficiency, medical professionals couldn't tell the parents how their daughter's progress would be.
Only seven other people had her condition, but none had that particular mutation. Over the years, the little girl's mobility worsened, and she now got around with a wheelchair and had hearing loss, leading to hearing aids.
In February 2023, Stacey was in search of a new home because her privately-rented house was no longer a good fit. She said she couldn't get her daughter's wheelchair into their old house and had to carry the little girl up the stairs.
At age six, Isla wanted her independence, and the family didn't have a bath, so Stacey had to bathe her in a baby bath. The loving parent even reached out to the city council to see how they could assist with finding a new home, but they've been on a waiting list for five years.
The mother of two felt she couldn't provide for her family or give them a safe environment to grow in as she'd always dreamed. Her home had many stairs, and her youngest daughter's room was too small to fit a bed. Fitting in her medical equipment was also out of the question.
However, Stacey said that despite it all, Isla kept being her "happy self." In 2020, the little girl went viral when footage of her making a love heart for her mother was shared.
Videos of her dancing in the garden also went viral while she was isolated from COVID-19 with her family due to her rare condition.
Stacy was initially worried about Isla ...
Kyle revealed that his older daughter began using TikTok and wished to be a social media sensation, so Stacey set up a family page, and they started making videos to keep them entertained and to do something positive amid isolation.
People worldwide sent them messages about how great their clips were, but the family wasn't doing the posting for fame, with Paige's father stating:
"We are just being us, and we don't change or play up for the videos."
He believed their intention was evident in their videos, and that was why people liked them because it was family fun. At age six, Isla was still battling her condition but was also integrating with society.
What Isla's Life Looks Like Now?
Isla thrives in school, but her housing situation severely affected her mother's physical and mental health. Stacey admitted that the physical toll on her was evident, and carrying her daughter around and trying to place her in the wheelchair to get into the house wasn't good, with her confessing:
"I feel like a failure."
During the height of the COVID-19 pandemic, Isla could attend classes because of her limited mobility. However, this year, she was in year one and a full-time student at Granby Primary School.
Stacey described her daughter as "so confident" that other children ran toward her instead of the opposite. The parent felt proud of her daughter and pleased that she had settled well at school because it was an environment that could include bullies.
Stacy was initially worried about Isla, who looked like a petite older woman on a May 26, 2023 clip, being a target at school. However, the complete opposite happened, with all the other school children wanting to be her friend.
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