Thank you everyone for your kind messages and support over the last week. For those of you that don’t know, Sam our 9 year old son was diagnosed with Juvenile Batten disease in 2019. Batten disease is degenerative and fatal. Over time children suffer the loss of their sight, speech and motor skills before suffering complex seizures and childhood dementia, eventually resulting in the loss of their life. There is no known cure. we were devastated when we learned what was to be Sams future. Sam is such a cheeky, happy boy with a big love for dinosaurs and his family. Life seemed so unfair. His future we had envisioned was now not his own and had been decided for him.

When we thought life had no more to throw at us, last week came a second diagnosis of Batten disease for our youngest daughter Alice. Alice is just 5. She loves to dance and talks about nothing more than growing up to go on pointe with the big girls, and once again we are left devastated that her future will not be what we imagined for her. We are absolutely broken and are struggling to process this horrendous news.

At the moment we are trying our best to stay strong and focus on a plan for what we CAN do for our precious children. We have started saving up to take them to back to Disneyland so we can give Alice her dream of being a princess for the day. We are also trying to plan other little trips and experiences we know that Sam and Alice will love so we can make as many happy memories as possible with whatever time we have left. At the suggestion of one of our friends, we have changed the go fund me page originally set up for Sam to a joint justgiving page for both Sam and Alice so that our family and friends can contribute to our goal of achieving their dreams and to help us make as many beautiful memories for as long as we can.

Thank you as always everyone for your support and kindness. At the moment we are taking each day/hour/minute as it comes and trying to stay positive.