Just one day after the second year anniversary of Charlie’s passing, Charlie’s parents, Connie and Chris, give an interview on Lorraine with Christine Lampard.
In the two years since Charlie past, and whilst still grieving for their son, Connie and Chris have set up a charity called the Charlie Gard Foundation, and head Charlie’s Law, which is currently making it’s way through parliament and the various legal stages of readings.
Chris said of Charlie’s Law: ‘The doctors would rather be working than preparing witness statements in a court. We need to find a solution to stop these getting to court in the first place.’
MPs, ethicists, doctors and other notable figures in the medical profession have been championing Charlie’s Law these past few months as momentum builds and agreement for change is becoming stronger within the medical, ethical and judicial sectors. More hearings and readings are set for the autumn, including various meetings, interviews and conferences that all help to refine the change and how best it should be implemented.
Equally, the foundation has been going from strength to strength supporting families affected by mitochondrial disease, and spreading awareness of mito at various events, functions and interviews. Chris also announced they will be funding a large research project in the coming months – one that has taken over a year to plan and discuss with members of the trustee board, members of our medical board, and mitochondrial specialists from around the world – and one that not only looks at finding treatments for Charlie’s specific gene, but will open up to look for better more viable treatments for a wider range of mito conditions.
Chris goes on to explain how they have recently launched the UK’s first Mito Monkey Mascot and have various fundraisers coming up too, including a group abseil down the ArcelorMittal Orbit on what would have been Charlie’s 3rd birthday. Chris will be abseiling too on Sunday 4th August and if you’d like to support Chris with his fundraiser you can do so here.
The foundation also supports treatment grants and is currently paying for some treatments for children affected by mito, including nucleoside therapy. Maxwell is one child who is currently receiving the benefit of nucleoside therapy for TK2, and you can visit his page here to find out a little bit more bout his journey.
If you’d like to get involved with our fundraising efforts and support our new research, or help us to continue to fund further research projects, or help us support more families affected by mito, then please view our Fundraising page for more details on how you can become a volunteer and get involved with our campaigns.
If you’d like to view the interview on Lorraine, please see the video below: