A mother of a tot born with an ultra-rare genetic condition is desperately trying to fund life-changing drug research which could be her son's "only shot".

Lucinda Andrews gave birth to little Leo last March unaware anything was wrong and was initially told by doctors it could just be shock that he could not move his arms or legs.

Mum Lucinda talks about the drug research she hopes will help her son

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.

After running tests, medics discovered Leo has an extremely rare genetic disorder which affects the TBCD gene.

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.

As a result, the youngster suffers from epileptic seizures and has difficulty moving and breathing.

The Lordswood resident said: "At that point I was at a complete loss. I did not know where to turn. The specialists said they did not know how to treat him and that the way to treat him was through physiotherapy.

"But I could never accept that there was nothing to be done to help Leo.

"For months I have sent thousands of emails and messages across the world in hopes I will find someone to help him.

"It was hard for me to wrap my head around but for me it has now become my world. I try my best to become Leo's expert and educate myself."

The 32-year-old – who lives with her parents Miriam and Kevin – is working with biotechnology company Rarebase in California which handle 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 then tests this against him.

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

Lucinda started the research process in September and is hoping they will reach the second stage by July but it comes at a cost of £220,000.

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.

She added: "I do not want to put all my eggs in one basket. It is a research stage, one could come back and say they did not find it. I want to find as many options as possible.

"What I hope at the very least is to prevent deterioration. He is only going to get worse. At the end of the day it is research but we just hope.

"Gene therapy is not in Leo's lifetime. If they can develop a drug, I then have time to find the funds for the therapy.

"I really believe in the work they are doing. It is going to help children that have similar genetic disorders. What they are doing is going to save thousands of children."

Only 16 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 on their JustGiving page here.

You can also follow Leo's story via their website or Instagram @aLifeForLeo.