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Mitochondrial Disease charity: The first UK Baby Born with DNA from Three People is an 'excitement'

The UK has seen the first baby to be born with three people’s DNA, with the use of a pioneering technique, that was only made legal in 2015 with help from mitochondrial disease charity, the Lily Foundation.

The IVF technique means that whilst most of the baby’s DNA will be from two parents, around 0.01% of the baby’s DNA will be from a third donor.

The DNA replacement therapy can prevent devastating mitochondrial diseases, which are incurable and often fatal soon after birth.

Liz Curtis, CEO and founder of the Lily Foundation called the birth of the baby a ‘huge excitement’ for the mitochondrial disease community: “The future is looking really bright for the mitochondrial disease community. It’s something we worked so hard toward. It’s a huge excitement, but it’s important to acknowledge there is still a long way to go.”

Image Credit: The Lily Foundation

Mitochondrial diseases are a result of a gene mutation, and the mitochondrial donation therapy (MDT) replaces the faulty gene through the IVF process.

Image Created By Eva Mackenzie

Peter Thompson, chief executive at the HFEA, described to the Guardian: “MDT offers families with severe inherited mitochondrial illness the possibility of a healthy child. The UK was the first country in the world to allow MDT within a regulatory environment … These are still early days for MDT and the HFEA continues to review clinical and scientific developments.”

The Lily foundation campaigned for MDT to be made legal in the UK in 2015, after those in opposition to the technique called it ‘unethical’.

Liz said: “We projected the voice of the patient. The 2015 debate was focusing on the science and many in the opposition held the view that it was just about pushing the boundaries of science. But we provided the human aspect to the science.”

Liz started the Lily foundation in 2007 after the loss of her eight-month-old daughter, Lily, after realising there were no mitochondrial disease charities in the UK that they could donate to.

Liz and her partner with their baby, Lily Image Credit: The Lily Foundation

“We had asked for donations at Lily’s funeral instead of flowers, but once he had went to donate the money – we realised there was nowhere to donate to.” Liz said.

The foundation have raised over £3 million for mitochondrial disease research, with Liz saying their efforts are “vital”.

“Mitochondrial disease hits quick and hard. One minute a child can be okay and within literally hours on life support. Mm-hmm. That can happen a number of times in a lifetime, not just once. The patient and their family are living constantly with a bit of a ticking time bomb. It’s like a lead balloon in your stomach.” Liz described.

“Our work is so important in pushing these developments forward, but not just to push the boundaries of science – it’s to minimise suffering.”, she continued.

“With this treatment, and these new babies - it's about saving lives and saving suffering.”


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