The Charlie Gard Foundation has taken a very different approach to delivering services, and hopes that this new and innovative way of working enables us to deliver the very best support to those families affected by mitochondrial disease. We have various unique relationships with certain charities that allows us to offer a wide range of services to families touched by a mitochondrial diagnosis.
Who can apply?
If you’ve been affected by a mitochondrial diagnosis, then you’re eligible to apply for assistance. We have no restriction on your age, area or financial situation, and all referrals are reviewed on a case-by-case basis, so if in doubt please do still apply as we’ll do our utmost to assist everyone who reaches out to us for help.
What can you apply for?
Whatever you need we’ll endeavour to find it for you. Here’s a list of just some of the services that can be provided:
specialist medical equipment not readily available on the NHS
- home adaptions
- funding for treatment not provided by the NHS
- essential household items
- respite holidays
- theme park days
- family photoshoots
- medical information and support
- financial advice
- financial grants
- benefits advice
- memory making days/events
- wish making
- fundraising help
- bereavement support
- end-of-life care support
memory making in end-of-life care
This list isn’t exhaustive, so if there’s anything else you may wish to request, then please don’t hesitate to contact us using our Apply for Assistance form. Or if you have any questions then feel free to drop us an email at firstname.lastname@example.org.
Who have we helped?
Within our first year of running as a charity we have been laying the foundations to ensure that the Charlie Gard Foundation is here for the future, and will continue to grow, evolve and develop for the better of the mito community.
We’ve been working hard on understanding how best to support our clients, developing invaluable relationships with collaborative charities to help deliver better services to clients, and looking for innovative and pioneering research projects to invest in. This is something that has taken time, but in between this we have been accepting clients and supporting them in a variety of ways.
Below are just a few stories and comments from some of our clients that will help you better understand what we do, and also to help explain the harsh reality of what it is like to live with mitochondrial disease.
“I would like to say a massive thank you to the Charlie Gard Foundation for helping to give Freya some freedom by funding her all-terrain wheelchair! Without your help she wouldn’t be able to join us on walks and just general getting about was difficult with her prescription chair.
Claire, Freya’s mum
“Both myself and Daniel can’t thank you enough for the information you’ve sent us so far. After finding out our devastating news about Daniel’s mitochondrial condition we can now start our journey knowing you are holding our hand along the way.
Your precious gift will create a long lasting memory of where we started our journey and help us measure how far we have come together.
Thank you for your kindness.“
Zoe, Daniel’s grandma and carer
Daniel received memory making gifts as part of Charlie’s Gifting Week in 2018, and has subsequently set up a fundraising page through the charity to help fund for a specialist hydrotherapy pool. To find our more about Daniel and his cause, please visit his page here.
We are really grateful to the Charlie Gard Foundation for all the help and support they’ve given to us as a family living with child loss and mito disease. The memory cushion with photos of our two babies is a priceless gift that we will always cherish.
Thank you to everyone at the Charlie Gard Foundation who was involved in arranging this wonderful gesture.
Sarah, who suffers from MELAS
“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
“The Charlie Gard Foundation is a wonderful charity. They have helped us as a family in so many ways by providing support and organising fundraising events for Maxwell’s Hope Fund. They are always at the end of the phone for answering questions or just a friendly chat.
“My name is Laura I am 33 and suffer from mitochondrial disease RRM2B. I was born a healthy 6lb 1oz and carried on being well until I was 8 when I started having trouble with my hearing. I struggled at school and at the age of 9 was offered a cochlear implant. I carried on in mainstream school and went to college where I gained a distinction in IT. At 17 I went in for a hearing infection and struggled to come round from the anaesthetic. They thought I had myasthenia gravis so I had a plasma exchange, but my neurologist knew it was something different.
He knew of a Professor Turnbull who specialised in mitochondrial disorders so arranged for me to go to Newcastle where I had a muscle biopsy, which confirmed I had mito but not what kind. It wasn’t until 2018 I found out I had RRM2B, which affects me in many ways. I am profoundly deaf, it affects my muscles, mobility, fatigue, respiratory, and swallowing. I had a peg fitted in 2007 because I couldn’t keep weight on and I’m now fed in this way.
Recently in the last year I have struggled to stay well and had numerous hospital stays. I am now on home ventilation, and assisted coughing which I hope will keep me as well as expected.
I like to knit and love watching TV. My computer was my life line and the support groups for mito really helped but recently I’m to tired and get very anxious to look at it for long.
I live with my mum and dad who I couldn’t do without, and I have a brother who is perfectly healthy and a cat called Lola.
I would just like to say a really big thank you to the Charlie Gard Foundation for there very generous gift of a Riser Recliner chair, and specialist bet, that were bought for me after coming out of ICU as I was struggling to get up. They will help me immensely at home. Steph was brilliant at answering our emails, listening to us, and for being there. And to Connie for a lovely phone call to my mum to see how I was and to see if they could help in any other way. I will be forever grateful.”
Laura, who lives with mitochondrial disease
“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.