In September 2020, my precious  4 years old granddaughter was diagnosed with Batten Disease, a rare genetic disease which is extremely life limiting. She is under the care of Great Ormond Street Hospital and is receiving infusions of an enzyme into her brain which we pray will halt deterioration of her neurological functions. Sadly, these children typically lose their eyesight by the age of 7, which is extremely cruel as many children cannot talk well and are wheelchair bound. I am looking to raise funds to help the BDFA towards a potential treatment which could save the eyesight of children with CLN2 Batten Disease. Among the many cruel symptoms of Batten disease and one that strikes fear into every parent is the loss of eyesight. The thought that their children will not be able to see their faces again is terrifying. It is believed that giving Brineura (the drug that is given during enzyme replacement therapy [ERT]) into the brain will not help save the sight because it is not known if it has the ability to cross through into the retina. Sadly there are some children who, despite receiving ERT, have lost their sight. Clinical trials for this are in early phases in Hamburg and Ohio and the Great Ormond Street team are in the process of exploring if they could conduct a similar programme in London. This will give children the chance to have the same opportunity. Please be part of something special and help us make a difference!