My son Regan who is 10 sadly fights mitochondrial MTT1 every day. Watching Regan fight this awfull disease is heartbreaking. He was a boy that could do a lot of things but is now very limited, and has had his mobility taken away. As soon as Regan was diagnosed with mito I contacted Connie and Steph as I’ve always followed Charlie Gard’s story. They are lovely people you can contact for support.

We are making as many memories as we can with Regan, and the Charlie Gard Foundation helped us do this by paying for our hands to be casted and put in a lovely frame. They also sent us a personalised family frame, and Regan got sent a Be Brave Mito Monkey that he loves. We also received presents for his birthday. We went to the Charlie Gard Foundation fun day and met Steph, Connie and Chris. They are lovely people who are trying to help and support other families who suffer with this awful disease. Amazing people inside and out, and I think it’s great what they are doing and can’t thank them enough.

Melanie, Regan’s mum