A couple’s joyful anticipation of their pregnancy quickly turned into a journey they never expected when their baby girl, Isla Kilpatrick-Screaton, was born with a rare condition that caused her to age at an accelerated rate.
Born on February 2, 2017, weighing 5lbs 10oz, Isla faced immediate complications after being delivered prematurely at 36 weeks in Leicester Royal Hospital. It took a month-long hospital stay before Isla’s parents, Kyle and Stacey, could finally take her home.
However, their relief was short-lived as Isla soon experienced a life-threatening episode that required her to be rushed back to the hospital.
At just three months old, Isla underwent an emergency operation to resuscitate her. Doctors discovered that her tiny tongue would block her airway whenever she was upset or agitated, putting her at risk. In October 2017, Isla received a diagnosis of mandibulofacial dysostosis, a condition that affects skin coloration and bone development.
Stacey made the difficult decision to leave her job as a teaching assistant to become Isla’s full-time caregiver. The family faced the daunting reality of having a child with a one-of-a-kind gene mutation, leaving them without a support network of other caregivers facing similar challenges.
Isla’s condition, which began before her birth, was often referred to as the “Benjamin Button disease” due to the resemblance to the character who aged in reverse in a famous movie.
Stacey and Kyle fought tirelessly for Isla’s life. The moment Isla was born, she struggled to maintain adequate oxygen levels, and nurses battled for hours to keep her airways open. Isla was immediately taken to the neo-natal intensive care unit, and the overwhelmed parents fell asleep, only to wake up and find their daughter gone. Stacey recounted the terrifying experience of feeling like her daughter was constantly fighting against medical interventions to save her life.
For the first five days of her life, Isla was incubated and placed in an induced coma. Stacey and Kyle were unable to hold their child, and Isla’s older sister, Paige, then 5 years old, was kept away to protect her. Isla spent two weeks in intensive care, losing weight and relying on a nasal tube for feeding.
After finally being able to bring Isla home, her parents faced another scare when she started choking and turning blue while being bottle-fed, leading to another hospitalization.
Genetic tests were conducted on Isla shortly after her birth, but due to the uniqueness of her gene mutation, medical professionals couldn’t predict her future progress. Only seven other people in the world had Isla’s condition, but none of them had the specific mutation she possessed.
As the years went by, Isla’s mobility worsened, and she now depends on a wheelchair and hearing aids due to hearing loss.
In February 2023, Stacey began searching for a new home that could accommodate Isla’s needs. Their current rented house presented challenges, as it had stairs that made it impossible to maneuver Isla’s wheelchair and lacked essential facilities like a bath suitable for a six-year-old.
Despite reaching out to the city council for assistance, the family found themselves on a waiting list for five years, unable to provide a safe and suitable environment for their children.
Despite the hardships, Isla remained a source of happiness for her family. The family started creating videos, which went viral on social media, showcasing their love and positivity.
While they received messages from people all around the world praising their videos, their intention was never fame but simply to have fun together as a family. Isla continued to battle her condition, but she also found integration and acceptance within society.
Isla’s journey has had a significant impact on her mother’s physical and mental health, with Stacey admitting to feeling like a failure due to the physical toll it takes to care for Isla. However, Isla’s enrollment as a full-time student at Granby Primary School has brought Stacey some relief.
Isla’s confidence and charm have drawn other children toward her, and she has found acceptance and friendship at school, defying her mother’s initial worries.
Despite the challenges they face, Isla’s family remains proud of her and grateful for the support they have received. Their story serves as a testament to their resilience and the power of love and acceptance in the face of extraordinary circumstances.
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