‘My super-rare daughter Summer is falling through NHS cracks’
# ‘My super-rare daughter Summer is falling through NHS cracks’
### An exclusive report on the struggles faced by a unique child in a failing healthcare system
Summer, a child afflicted by an extremely rare condition, highlights the glaring deficiencies within the NHS. Hardly anyone can fathom the true struggle faced by her family as she is the only child in the UK diagnosed with this specific ailment. Her needs are not being met adequately, leaving her mother, Larissa, in a constant battle for essential support.
Larissa shared the daunting reality of Summer's daily life: "She can't walk on her own, she can't talk. She needs help with self-care and has no awareness of danger." This situation is exacerbated by the inadequacies of the system that is supposed to provide care and support. Larissa has been forced to navigate a labyrinthine bureaucracy to secure the specialized equipment Summer urgently requires.
The fight does not stop at physical equipment. Larissa insists, “Every piece of equipment she has ever had has been a bit of a fight, because it's not standard equipment. There's a massive gap in statutory services for children like her." This gap is largely due to a "one size fits all approach" prevalent in the NHS, neglecting the specific requirements of children with exceptional needs.
As Summer's condition necessitates specially designed seating to avoid worsening her spine, Larissa expressed deep concerns regarding unsuitable options: "The last thing we want is to ruin all that hard work and progress with an unsuitable chair that makes her spine worse." The chronic neglect from the NHS has left families like hers feeling abandoned and desperate for the essential care their children deserve.
Larissa's experience illustrates the wider systemic failures that continue to affect countless families across the country. The pressing need for a reformed approach to care and customized support cannot be overstated.