A determined mum is backing a campaign for a UK-first centre to support her son who has a life-long condition.

Caroline Shaw, of Baycliff near Ulverston, is flying the flag for DiGeorge Syndrome – a genetic disorder which is thought to affect one in 2,000 people in the UK.

The 42-year-old, whose son Maxen was diagnosed with the condition which is also known as 22q, has signed a petition addressed to the Department of Health and Social Care campaigning for a UK-first centre to support adults with DiGeorge Syndrome.

Currently, when a patient with DiGeorge Syndrome turns 18, there is no facility in the UK which can offer specialised support for the condition.

Mrs Shaw, who runs Shaw Plant Training Ltd with her husband Thomas, said her son's condition is a syndrome not many have heard of and involved learning and behavioural problems, heart problems, hypocalcemia and a low immune system.

Due to the lack of knowledge surrounding the syndrome, Mrs Shaw said local GPs and community care were unable to support adults diagnosed with the condition and is calling for a specialised clinic in the UK to be opened up.

She said: "Currently Canada has the only hospital who have opened a 22q adult clinic in the world.

"We want to follow their lead and support the health in our children.

"We want to know they will be supported and have a future with knowledge in their condition.

"Help improve their quality of life, help them settle into adulthood.

"Some patients are not even diagnosed until adulthood and there’s no clinic to assess all their needs for their syndrome. It’s so important."

The mum-of-four said she is concerned for Maxen when he turns 18 and will no longer receive specialist support.

"Maxen will most likely be living with us for the rest of our lives," she said. "But we're not going to be around forever.

"It would be wonderful for him to live independently when he turns 18 with support from a specialist centre – that just isn't possible with the current support available.

"It's a massive concern that when Maxen turns 18, all he has is the local doctors and we've visited health professionals who haven't even heard of DiGeorge Syndrome so we're very worried."

Mrs Shaw said it would be a 'massive relief' if a specialised centre for 22q was built in the UK.

"It would be such a massive relief knowing he could get the help and support he really needs," she said.

"He has a higher chance of developing mental health issues when he's older and rather than rely on the GP, he needs specialist services who can support him better.

"You never know that one of your family members may be diagnosed with the condition one day and you need the facility in the future."

If you would like to sign the petition, visit: https://you.38degrees.org.uk/petitions/open-an-adult-22q-deletion-clinic-in-the-uk