The mother of a tot born with an ultra-rare genetic condition says there is hope after the first stage of life-changing drug research was successful.

Lucinda Andrews gave birth to Leo in March 2021 and was initially told by doctors the reason he could not move his arms or legs was probably due to shock.

But after six hours, his condition had not improved and he was transferred to intensive care before being taken to St Thomas' Hospital in London.

Following tests, 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 18-month-old suffers from epileptic seizures and has difficulty moving and breathing.

Refusing to give up hope, Lucinda spent months researching and contacting healthcare professionals in the hope one would be able to help support or find a cure for Leo's condition.

The 33-year-old – who lives with her parents Miriam and Kevin – started working with biotech company Rarebase in California which handles breakthrough drug discoveries for rare diseases.

Stage one of the process involves researching every approved drug that currently exists to test if one or more can be re-purposed to treat Leo. The second stage involves more tests to make sure they would not be harmful to Leo.

The company will then create a cell model directly from blood samples to test therapeutic treatments.

Since starting the research in February, 38 different medications have been identified as potential treatment options.

Lucinda, of Lordswood, Chatham, said: "They are getting results back of FDA approved drugs that are already developed but there will need to be a deep dive to make sure they are not false positives.

"I am pleased they have found some potential drugs. The biggest fear factor is because it is research it is not guaranteed. They could have come back and not been successful and found no drugs.

"We were very lucky to have some to go forward with into phase two. I feel relieved and just hope one of the drugs will make it to the final stage."

Researchers are now entering stage two – which will cost around £132,600 – which involves a more thorough analysis to make sure the drugs are not detrimental to Leo's health.

They will look at the toxicity levels, side effects, dosages – as some have not been used at a paediatric level before – and the area of the body they target to ensure they are suitable.

It is hoped if researchers are able to match a drug, Leo will no longer be dependant on a breathing machine at night and could learn to walk and talk.

"There is always that fear that we could go back to the drawing board but this is all he has got really," Lucinda added. "Anything that can help improve his quality of life is worth it.

"He is doing pretty well. We are still working on solo sitting but he is doing well supporting his head. I really want to get him to solo sitting by Christmas."

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

If you would like to donate to fund research you can do so on their JustGiving page here.

You can also follow Leo's story via their Instagram and TikTok @aLifeForLeo.