At Princes lots of our children have a varitety of complex needs, including medical. Currently one of our children has Batten Disease, a neurodegenerative life limiting condition. Children appear healthy at birth and symptoms for CLN2 Batten Disease begin between 3-4 years old. Children lose the ability to walk, talk and eat. They lose their vision completely and develop childhood dementia as well as uncontrollable seizures. The disease progresses rapidly with children becoming completely dependent on parents/carers by the age of 5-6. The life expectancy of a child with CLN2 Batten Disease is between 6 and 12 years old.
However there is hope, a select number of children in the UK have been receiving a drug called Cerliponase alfa. This drug has shown to slow down the progression of the disease and in some children even stabilise it. Children who are NOT receiving this drug will die whilst children who ARE receiving the drug are still able to walk and talk, and enjoy life with their families. This treatment is currently available to patients in Europe.
NICE and NHS England have made the decision not to recommend this treatment be available children in the UK with CLN2 disease.
At Princes we are asking people to support the below petition by signing it, so the petition goes before parliament. Thank you.