The parents of a young girl in Acton, west London, are facing a challenging situation after their daughter Rosie was diagnosed with a rare disease that causes blindness and paralysis. Rosie, a nearly four-year-old described as affectionate and lovable, began showing speech issues at the age of two. Her parents, Emma Vukic and Max Bridge, shared that Rosie has experienced over 3,000 seizures since her first seizure in September 2024.
After gene testing, it was revealed in August that Rosie has Batten disease CLN2, a rare genetic disorder affecting only a small number of children in the UK. This condition will lead to the loss of crucial abilities like walking, speaking, seeing, and swallowing, ultimately resulting in paralysis and death. Although the disease is not curable, treatment is available to slow down its progression, allowing Rosie to create more memories with her family.
Emma and Max expressed their deep sorrow over the news, emphasizing the emotional toll of continuously grieving as Rosie’s condition worsens. Rosie’s development had been normal until she started experiencing speech regression around the age of two. She also displayed characteristics that hinted at mild autism, including jaw clenching and hyperactive behavior.
Rosie’s diagnosis later revealed complex, drug-resistant epilepsy, leading to the discovery of Batten disease CLN2. The disease typically begins with seizures and progresses to affect various motor and cognitive functions. Without treatment, the life expectancy for children with this condition is around 10 to 12 years.
Rosie’s parents are actively seeking ways to enhance her quality of life, including accessing crucial treatments and therapies. They have set up a fundraising campaign to provide Rosie with memorable experiences and necessary care. The family aims to raise awareness about Batten disease CLN2 and advocate for better support and research for affected families.
To support Rosie and learn more about her journey, visit the fundraising page. For additional information on Batten disease and available resources, visit the website for the Batten Disease Family Association (BDFA).