A fundraising page started by a mum to fund life-changing drug research for her son born with an ultra-rare genetic condition has become a registered charity.

Lucinda Andrews of Lordswood, Chatham, set up A Life For Leo in 2021 following the birth of her child, Leo, in March of that year.

When he was born, Leo could not move his arms which Lucinda was initially told by doctors was probably due to shock.

But after six hours, his condition had not improved so he was transferred to St Thomas' Hospital in London for more tests.

It was there medics discovered Leo has an extremely rare genetic disorder which affects a gene, known as TBCD.

It is an incurable and deteriorating condition that affects the brain, nervous system and muscles and is so unknown it does not even have a name, so is referred to by the gene it impacts.

As a result, the one-year-old suffers from epileptic seizures and has difficulty moving and breathing.

Refusing to give up hope, Lucinda spent months researching and eventually begun working with biotech company Rarebase in California which handles breakthrough drug discoveries.

The 33-year-old – who lives with her parents Miriam and Kevin – started the fundraising page as an effort to pay for the expensive research.

And at the end of last year, TBCD – A Life For Leo Foundation became a registered charity – 20 weeks after Lucinda originally applied.

She said: "When I first started this journey it was as a personal fundraiser but as time has gone on and more children have been diagnosed with TBCD it has just grown.

"It is more than a JustGiving page now. It means so much to us. It was a long time coming. It was a long process but it came around so unexpectedly, all of a sudden we were a charity.

"My first reaction was disbelief then complete shock and then excitement. I jumped straight into what we do next.

"I was so overwhelmed. It opens up so many doors to help other children and families across the country. Now we can start making some big steps forward."

Less than 20 people in the world have been officially diagnosed with TBCD since 2016 and Lucinda hopes the charity will now be able to help and support all those affected.

The charity is currently starting out and has joined Amazon Smile's scheme – where a percentage of your purchase is donated to the charity – and is now also looking for business to support it.

If you would like to get involved or would like more information, email info@aLifeForLeo.com