In a quiet hospital room in Manchester, a mother and father are facing the unthinkable — watching their 7-year-old daughter slowly fade from a condition so rare that no one else on Earth has ever been diagnosed with it. Doctors have told them there’s nothing more they can do. Now, they’re counting her days in weeks.
“We don’t even have a name for what’s killing her,” said her mother, Sarah Wilcox, her voice breaking. “Every night, I sit by her bed and listen to her breathing. I don’t know if she’ll wake up in the morning.”
Their daughter, Emily, was born healthy and joyful, with a bright smile that lit up every room. But by age four, she began to lose her balance. Then her speech slurred. Within months, she could no longer walk. Doctors at Great Ormond Street Hospital spent years trying to identify her condition — running genetic panels, brain scans, and international consultations — only to conclude it was “a previously unseen neurological disorder.”
“We’ve had experts from Mayo Clinic to Johns Hopkins look at her case,” said her father, Mark Wilcox. “Every single one told us they’ve never seen anything like it.”
Heartbreaking: 7-year-old Emily Wilcox is the only person in the world with her condition — and doctors fear she has just weeks left.
@BBCWorld
Researchers discovered a genetic mutation so rare it doesn’t even appear in medical databases. It causes her brain to slowly lose communication with her muscles — a process similar to ALS, but far more aggressive. “Her neurons are dying at an accelerated rate,” explained neurologist Dr. Helen Kumar. “We can try to manage symptoms, but there is no known treatment.”
For Emily’s parents, those words shattered their world. “We were told to take her home and make memories,” Sarah said softly. “How do you make memories when you’re watching your child disappear?”
Since the diagnosis, the Wilcox family has turned their home into a miniature intensive care unit. Machines hum through the night, monitoring her oxygen levels. Nurses visit daily. Her favorite stuffed rabbit sits beside her on the bed, its fur matted from years of hugs.
“Some days, she laughs,” Mark said. “Other days, she just stares off, like she’s somewhere else entirely.”
“They told us to take her home and make memories — but how do you do that when you’re watching her fade away?” — Emily’s mom @guardian
Doctors estimate that Emily may have only weeks left. The disease, which started as tremors and fatigue, has now affected her ability to swallow and breathe on her own. “Her body is shutting down,” said Dr. Kumar. “It’s devastating — not just because it’s fatal, but because we can’t even name it.”
In the search for answers, the Wilcoxes turned to the internet. Through a Reddit forum, they connected with geneticists around the world. Some offered to study her DNA further; others said it could take years to understand. But Emily doesn’t have years. “We just want someone to say, ‘We’ve seen this before,’” Sarah said. “But no one ever has.”
Her story has since captured hearts globally. A GoFundMe campaign launched by a family friend has raised more than $400,000 to help cover experimental treatments and travel expenses. Thousands have left messages of support from countries as far as Japan and Brazil. “She’s touched people she’ll never even meet,” Mark said. “She’s done more in seven years than most of us will do in a lifetime.”
“She’s the only one on Earth with this disease — and the whole world is praying for her.” @CNN
Despite her condition, Emily still hums songs from her favorite movie, Frozen, and whispers “I love you” before falling asleep. “She doesn’t understand what’s happening,” Sarah said. “And maybe that’s a mercy.”
Scientists from Cambridge University have now joined the effort to study her DNA, hoping to publish a paper that could shed light on other unclassified genetic disorders. “Even if we can’t save her,” said Dr. Kumar, “Emily’s case could save someone else in the future.”
But time is running out. “Her breathing has gotten weaker,” Sarah said. “We’ve already had to say goodbye in our hearts — now we’re just waiting for her body to catch up.”
“Her story is changing medicine, even as it breaks our hearts.” — Dr. Helen Kumar @Reuters
At night, Mark sits by her bedside, holding her hand as machines beep softly in the background. “I tell her stories about the stars,” he said. “I tell her she’s one of them now — one in a billion.”
Sarah adds that she doesn’t want her daughter remembered as a tragedy, but as a miracle. “She was born to teach the world something,” she said. “Even if it’s just how fragile — and precious — life really is.”
Doctors say the family has shown extraordinary strength, but the reality remains unbearable. “Every time I see them, I think — this is what love looks like,” said nurse Angela Roberts. “Pure love. No cure. Just love.”
As the world rallies around Emily, her parents say they’re taking it one breath, one hour, one heartbeat at a time. “We know the end is near,” Mark said. “But we’ll be there, holding her hand — every step of the way.”