A mother has been informed that she may have only seven years remaining with her daughter due to a rare and incurable disease affecting a small number of children in the UK. Stacey Sprason, 41, experienced a terrifying ordeal when her child, Teraysa, had a sudden seizure and was diagnosed with Batten disease. This devastating condition, which has no cure, impacts a mere 40 children in the UK, as reported by the Batten Disease Family Association. Tragically, it is anticipated that Teraysa’s life expectancy may not exceed 10 years.
Expressing her anguish, Stacey, from Dorset, shared, “We are heartbroken and shattered as a family. I always felt a strong maternal bond and dreamed of being a mother. It is incredibly unfair to face the prospect of losing one of my children. I never imagined such a fate.”
Stacey, who has seven other children with her husband Michael, described the distressing moments following Teraysa’s initial seizure, including a near-drowning incident during a seizure in a paddling pool. The family was shocked to learn that the disease was genetically linked to both parents. They now endure constant worry and have implemented safety measures, such as a motion sensor camera above Teraysa’s bed.
Recently, Teraysa underwent brain surgery to install a reservoir aimed at reducing fluid buildup. She is scheduled for further treatments to administer necessary enzymes, costing £500,000 annually. Despite the financial strain, the family deems this treatment essential, as it could prolong Teraysa’s life significantly.
Although the costly treatment is currently funded, there are potential risks of Teraysa losing her vision and essential functions like walking, talking, eating, and swallowing. Stacey remains anxious about her daughter’s response to treatment and fears their time together may be shortened.
The family seeks support in raising funds for Teraysa’s ongoing care, with donations already exceeding £4,663 of their £11,000 target. Their ultimate wish is to fulfill Teraysa’s dream of visiting Disneyland before any further decline in her health. Stacey emphasized their hope for a cure to emerge and advised others in similar situations to hold onto hope amidst the challenging journey.