Weeks after 3yearold Brit Florence Swaffield rushed to be a bridesmaid at her parents’ wedding, she started having problems with food. Anything she swallowed was spat out minutes later. The girl also slept almost 22 hours a day.
The girl’s mother, Phoebe, said she took her daughter to the hospital on several occasions, but doctors didn’t think she had any problems. Florence had difficulty walking and forgot all the words she had already begun to speak.
When the girl started kindergarten, her parents noticed that she was also much shorter than the other children and had a cognitive delay. After months of trying different doctors, Florence was finally diagnosed in August 2021 with Batten’s disease, which is rare and known to be a type of earlyonset dementia.
The disease is genetic, degenerative and life expectancy is between six and twelve years. The girl also has VerveriBrady syndrome, a condition characterized by developmental difficulties and speech delay. Florence is the only person in the world with both syndromes at the same time.
Shortly after the diagnosis, the British woman began to have seizures. “I don’t understand how life can be so cruel and how it could have happened to our family,” Phoebe told The Sun.
Florence is given an enzyme every two weeks as part of her treatment and is expected to need the medication for the rest of her life. The disease cannot be cured. The girl’s family is crowdfunding potential treatments and wants to make donations to fund research into gene therapy to treat the disease in the future.