We have a little girl called Rebecca who was diagnosed with a mitochondrial condition called Leigh’s disease surf 1 deficiency, which is a life-limiting illness. Living with this is a living nightmare and we spend every day trying to make memories for me, my wife and Rebecca’s big sister that will last a lifetime. Our whole life changed when we found out my wife had to stop working as we lost an income that put a strain on our drive to make memories.

That’s when Stephanie from the Charlie Gard Foundation got in touch after I had contacted her regarding some information about a projector for Rebecca. It was sorted within a few weeks ⭐️ Never for a second did I except the charity to buy us this but we would never have been able to afford a projector at this time of year… but it went much further than that as the foundation also organised for us to receive a hand casting kit to enable us to have a family casting of the four of us holding hands, and they also arranged for us to send some of Rebecca’s clothes away to be made into a teddy, which is something her big sister will cherish forever. They then put us in touch with a charity that arranged for us to go to a Christmas party and show, and all of this was done with no stress or hassle for our family!

Stephanie and all involved at the foundation do a fantastic job in helping families who are living a nightmare and do it so well. For them to help us make the one thing that no one can ever take away or change is something they should be so proud of and I’m sure that if Charlie is looking down on his parents then he would be so proud of the difference they are making to people’s lives in his name. This truly is a fantastic charity.

Andrew, Rebecca’s dad

It’s with great sadness that Rebecca sadly past away in June 2019, and our thoughts and prayers are with Rebecca’s family at this difficult time.

We’re glad we were able to help make precious memories for Rebecca and her family, but we need to do more. We need to find better treatments, better support, and ultimately find a cure.

If you’d like to help us win the battle against mito, then please visit our Fundraising page to find out how you can help us to create a brighter, mito future because mito matters.