**Family’s Heartbreak as Little Freddie Battles Exceptionally Rare, Incurable Condition**
A family from Upminster, Essex, have issued an emotional call to the public after their four-year-old son, Freddie Elwood, was diagnosed with an extraordinarily rare neurodegenerative illness for which there is currently no cure. The family’s world changed abruptly when what first appeared to be normal childhood stumbles signalled the onset of a devastating disease.
Freddie, born in May 2021, was thriving during the first 18 months of his life. Mum Emily, 33, recalled an ordinary home life, filled with laughter, school runs for older brother Harry, and fun family outings. Freddie was learning to talk, could play, and even enjoyed roaring like a lion on cue. But by his second birthday, subtle changes in behaviour began to emerge. The toddler lost his steadiness, strength, and words he’d recently begun to say.
“I noticed Freddie was not himself. He was quieter, slipped back with speaking, and seemed off balance,” Emily shared. “At first, we thought perhaps he was just unwell, but as the days went on, I knew it was more. Yet, I struggled to make others understand that it was serious.”
The family’s concerns deepened when Freddie lost further motor skills and stopped speaking almost entirely before they secured an appointment with a paediatric specialist. Emily remembers the consultant’s immediate concern. “She mentioned ‘degenerative’. I had never heard the term used like that before. When I searched what it meant, I refused to believe it—Freddie had been absolutely fine until then,” she explained.
Medical investigations intensified. Freddie underwent blood tests, an urgent MRI, and swift referral to Great Ormond Street Hospital. Despite their hopes for a clear solution, the family watched Freddie’s symptoms deteriorate rapidly during this period. Emily reflected on the unbearable anxiety: “Each week he declined more. I kept convincing myself this must be treatable.”
Then, in November 2023, devastating news arrived. Freddie was diagnosed with Infantile Neuroaxonal Dystrophy (INAD), a desperately rare condition affecting around one in a million children, with an average prognosis of just five to ten years. The reality left the family reeling. “Holding Freddie that evening, seeing his innocent face, my heart broke. Our lives changed forever in a moment,” Emily said.
Now four, Freddie has lost the ability to walk, sit independently, or swallow. He no longer speaks or fully comprehends his surroundings. The family’s daily life has transformed beyond recognition. Outings are rare and need significant planning due to Freddie’s complex needs. Emily explains that even routine school drop-offs have become challenging. “Freddie spends his days in a pram. Loud or busy places unsettle him. Feeding can take hours through a pump, and I do daily exercises just to keep his muscles from seizing up,” she shared. “It’s a grief that repeats every morning—grieving the life he had, adapting to the one we live now. It feels impossible at times.”
Yet, amid the heartbreak, a glimmer of hope remains. Researchers are in the late stages of developing a gene therapy aimed at halting INAD’s progression. However, funding remains a barrier due to the condition’s rarity, meaning pharmaceutical companies have little incentive to invest. Emily has joined the campaign to support the INADCURE Foundation, seeking donations to advance the trial. “Children like Freddie can’t afford to wait,” she insists. “Early data suggests gene therapy could transform outcomes and give families hope.”
Freddie’s care team has been a vital support throughout this journey, Emily notes. “From the consultants at Great Ormond Street to local physios, occupational therapists and nurses, we are grateful. But what we need most now is progress—funding to finish this crucial research.”
There may also be the possibility that Freddie’s only chance at treatment will be available overseas, potentially in America. As a result, the family are also seeking assistance to help cover travel and medical costs if required.
The Elwoods, while grappling daily with uncertainty, remain determined to fight for their son’s future. Emily encourages those moved by their story to consider contributing, stating, “We’re not only fighting for Freddie, but for every child struck by this cruel disease. Time is not on our side.”
Supporters wishing to help can donate to the family’s campaign through their fundraising page: [https://gofund.me/442772eb](https://gofund.me/442772eb).