😢 “WE TRULY THOUGHT SHE HAD MORE TIME…” – Britain is holding its breath for DIY SOS star Isla Screaton Kilpatrick 💔

Just months ago, this radiant 8-year-old’s beaming smile and brave spirit lit up living rooms across the country when Nick Knowles and the DIY SOS team transformed her home into a safe, accessible haven. The nation fell in love with her story – the only child in the UK (and possibly the world) battling a devastating rare genetic condition that makes bones brittle, organs age prematurely, and every day a fight for independence.

Full details:

Eight-year-old Isla Screaton Kilpatrick, whose emotional appearance on BBC’s DIY SOS touched millions, is now battling for her life in hospital amid complications from a rare genetic disorder. The Leicester girl, diagnosed with a unique mutation of mandibuloacral dysplasia, became a national favorite in late 2025 when the renovation show transformed her family home to improve her independence and quality of life. Just months later, her family has shared devastating updates indicating a serious downturn in her health, prompting an outpouring of concern and support across the UK.

Isla was born with mandibuloacral dysplasia, a condition so rare that she is believed to be the only person in the UK—and possibly the world—with this specific genetic mutation. The disorder affects bone development, leading to brittle bones, restricted growth, muscle weakness, and premature aging of major organs. It also causes narrow airways, requiring a tracheostomy in her early years, along with feeding tubes and ongoing respiratory support. Additional complications include heart issues, temperature regulation problems, and mobility challenges that have made everyday tasks difficult since infancy.

From a very young age, Isla faced life-threatening episodes. As a toddler, she spent extended periods in hospital after breathing difficulties and required resuscitation. Her small jaw and tongue position have repeatedly risked airway obstruction, and specialists have long warned of heightened risks for strokes, heart attacks, and organ failure as she ages beyond early childhood. Despite these challenges, Isla’s family—mother Stacey Kilpatrick, sister Paige, and extended relatives—has focused on giving her as normal a childhood as possible, sharing positive moments on social media under the handle @islaspaige.

The family’s story gained widespread attention in 2024 when they appealed for help adapting their Aylestone home. The upstairs-only bathroom, high switches and handles, and lack of storage for medical equipment made daily life increasingly difficult. Stacey, a single mother, described feeling like she was “failing” to provide the environment Isla needed. Producers of DIY SOS responded, launching a call for volunteers that drew over 1,000 applications—a near-record for the show.

In February 2025, around 160 tradespeople, builders, electricians, and other volunteers descended on the semi-detached property for a week-long build. Led by presenter Nick Knowles, designer Gaby Blackman, and project manager Ian Hodgkinson, the team installed a downstairs bathroom, lowered door handles and light switches, added handrails, and made other bespoke adaptations to promote Isla’s independence. Companies donated materials, and local heroes stepped up, turning what could have been a logistical nightmare into a heartwarming success.

The episode aired in October 2025 as the opener for the new series, drawing millions of viewers. Emotional highlights included Isla bursting into tears when told the team would help, and the family’s tearful reveal of the finished home. Isla, beaming, said she could now “get around the house more easily.” Stacey called the experience “exciting, stressful, daunting,” but one they would “treasure forever.” Viewers flooded social media with praise, many reporting they were “sobbing” within minutes of the broadcast. Knowles himself noted the show highlighted “how many good, generous people are across the country.”

The transformation provided much-needed relief, allowing Isla greater freedom and reducing some daily strains on the family. Stacey shared follow-up updates expressing gratitude, noting how the changes had already improved life seven months on. However, the underlying condition remained progressive and unpredictable.

By early 2026, reports emerged of a sharp decline in Isla’s health. Family statements and media coverage indicated she had been admitted to hospital in critical condition, with her fight described as more intense than previous episodes. The phrase “we truly thought she had more time” captured the shock felt by those close to the story, reflecting how the DIY SOS glow had given hope that adaptations might stabilize her quality of life longer-term.

Complications from mandibuloacral dysplasia can escalate rapidly, particularly involving cardiac strain, respiratory failure, or organ stress from premature aging effects. While exact details of the current hospitalization remain private, the family’s previous openness about risks—such as potential strokes or heart events—has fueled public worry. In October 2025, shortly after the episode aired, the family had to publicly debunk a cruel online death hoax targeting Isla, underscoring the emotional toll of public scrutiny.

The response has been swift and supportive. Fans of the show, along with strangers moved by Isla’s resilience, have flooded the family’s Facebook page with messages of love, prayers, and encouragement. Hashtags like #PrayForIsla and #IslaStrong have trended locally, and donations to related charities or direct support appeals have reportedly increased. The DIY SOS community, known for its generosity, has once again rallied, with many referencing the episode as the moment they first connected with the family.

Isla’s case highlights broader issues around rare diseases in the UK. Mandibuloacral dysplasia falls under progeroid syndromes, with limited research and no cure. Families often navigate fragmented specialist care, high costs for equipment, and emotional strain from uncertain prognoses. The DIY SOS intervention demonstrated how community action can address practical barriers, but it also underscores that home adaptations alone cannot halt disease progression.

Stacey has consistently emphasized Isla’s “massive character” and the joy she brings, even amid hardship. Previous community efforts—like a 2024 garden safety project funded by local charity Community Wishes—show a pattern of support that has helped the family cope. Rainbows Hospice and other pediatric palliative care providers have been involved at various stages, providing respite and symptom management.

As Isla fights in hospital, the nation watches with bated breath. Her story—from a toddler dubbed a real-life “Benjamin Button” case due to premature aging features, to a schoolgirl inspiring volunteer armies, to now this urgent health crisis—serves as both an inspiration and a sobering reminder of vulnerability. Medical experts note that outcomes for such rare mutations are hard to predict, but advances in supportive care have extended lives in similar conditions.

The Kilpatrick-Screaton family continues to share updates sparingly, focusing on positivity where possible. Whether this latest battle brings recovery or further challenges remains uncertain, but the support network built through DIY SOS and beyond stands ready. For a girl who has already overcome so much, the hope is that strength, science, and solidarity will carry her through once more.