15/12/2016 11:29 GMT | Updated 16/12/2017 05:12 GMT

Mitochondrial Donation - How The Patient Voice Helped To Make History

On 15th December, 2016, in a historic move, the HFEA gave mitochondrial donation the final approval. Clinics can now apply for licences to undertake mitochondrial donation techniques on families at high risk of passing mitochondrial disease to their child. NHS England will fund the first treatment trial for women who meet the HFEA criteria, so long as they agree to long term follow up of children after they are born.

It's been quite a journey to get here. For the scientists, it started as early as 2000 when The Chief Medical Officer's Expert Group Report, Stem Cell Research: Medical Progress with Responsibility considered and recognised the future potential use of the technique in treatment of Mitochondrial Disease.

Our involvement as a charity started 12 years later. In 2012 The Lily Foundation were invited to speak at a HFEA briefing about a Mitochondrial Donation. What had been up until then a purely scientific debate turned into one of the reality of Mitochondrial Disease. Sharing our personal stories of the loss of our children, and the journey of our families, and their brave children, added a dimension not previously seen. Mitochondrial disease is a devastating condition with no treatment or cure and sadly too many young lives are cut short.

From that point we became more involved in the campaign. We worked closely with The Wellcome Trust and Professor Doug Turnbull and his team at Newcastle University to get Mitochondrial Donation, a ground-breaking type of IVF which would allow families a chance of having a healthy child to be a reality rather than a possibility. Giving such hope to some of the most amazing people you could ever meet.

We have campaigned alongside the families we support and used a patient voice to get legislation passed through the House of Commons and the House of Lords in 2015. A voice that has been publicly recognised that made a difference to those who were tasked with making decisions on whether the law should be changed. The strength and determination of our families and everyone involved in the process is something we are very proud of. Today's positive news from the HFEA gives us huge hope that very soon families will benefit from this ground-breaking technology.

Yes, it has taken a long time to get to this point. It has been frustrating for many families who are looking to use this technique to have a child free from mitochondrial disease. However we are so proud of the processes that have been followed in the UK and we are confident that all the rigorous scrutiny of the science behind Mitochondrial Donation means that families applying to use this technique soon will absolutely have the best chance of success.

Our mission however does not stop there. We still need to find better treatment and ultimately a cure for Mitochondrial Disease and all our families. This is a monumental step in the right direction but we still have further to go. For all those affected, we along with our amazing families and incredibly loyal supporters will keep going until we get there.

To find out more about Mitochondrial Disease please watch our animation

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