In June the first child received Gene therapy transfer for Battens disease. What an achievement for Phil Milto, his dream coming true.

A brave young boy named Zach was the first, then Nathan and now P.J have also been treated.

Bobbie underwent treatment in late 2004. She came through it ok, but then developed seizures that we could not control. We brought her home where she passed away peacefully 23rd Nov 2004.

Because of this the trial was paused for 12 months, but has now started again and kids are being treated, including another girl from the UK, called Jasmine, see links to the Jordanjay trust. She is only 4 years old and can still do most things normal kids can do. She is doing well and we hope she continues.....