Our son Matthew was developing as expected until approximately 15 months old when he started to regress to a point where he now needs support for all tasks that the majority of us take for granted. We have undergone years of medical investigations which eventually led us to the best at Great Ormond Street Hospital. Our worst fears were confirmed to us on the 3rd October 2018 where we learned Matthews fate of the horrendous terminal condition of infantile neuroaxonal dystrophy. The prognosis is between the ages of 5 to 10 years. So we need to make every day count to the best of our ability.

The generosity of friends and family have supported with vital equipment to date but as Matthews time with us narrows, memories are becoming more important to us than ever. Any support to help us achieve this will be gratefully appreciated.