THE mother of a Newport four-year-old has shared her son's story to highlight the life-limiting condition he lives with.

Lucy Patten also hopes to raise the funds to get her son four-year-old son Elliot onto a clinical trial seeking a cure for Duchenne Muscular Dystrophy.

Duchenne is a progressive muscle wasting disease which primarily effects boys.

Elliot was born seemingly healthy and achieved most of his milestones on time.

However, Ms Patten said that her son began showing some challenges in his mobility when he started to walk.

"He fell over more than the average toddler and wasn’t able to climb stairs or jump," she explained.

"As a concerned first-time mum, I highlighted this to medical professionals and after 18 months of back and forth to multiple appointments, we finally got the diagnosis for Elliot."

Having Duchenne means Elliot cannot produce a protein called Dystrophin, which is vital for muscle growth.

This means he will likely lose the ability to walk by the time he is 10 years old.

Ms Patten described how Duchenne would progressively affect Elliot's muscles the older he became.

"He will lose all mobility from the neck down by the time he is in his late teens," she said.

"Eventually the muscles around his heart and lungs will cease to function."

Life expectancy for people with Duchenne is in the early 20s.

"There is currently no cure or effective treatment available on the NHS to treat young boys living with Duchenne," Ms Patten said.

This is why, in 2021, Ms Patten set up Elliot’s Endeavours - in support of national charity Duchenne UK - to help end the condition.

"Around the world, there are scientists working hard to tackle this disease and consequently there are exciting treatments in development that can dramatically change the trajectory of boys living with Duchenne," she explained.

"These treatments are currently being tested in clinical trials which are long and costly. With no government support, clinical research relies heavily on charity donations."

MORE NEWS:

The cost for one child to partake in a clinical trial for one year is around £10,000.

In the first year, Elliot’s Endeavours raised more than £35,000, which went into funding a pioneering approach of gene editing which, if successful, will allow boys living with Duchenne to produce Dystrophin, resulting in significant slowing of disease progression.

Ms Patten said that she is currently trying to get Elliot onto a clinial trial.

"Elliot’s Endeavours will continue to raise money for clinical trials in the hope that we accelerate treatment to become available on the NHS and hopefully find a cure," she said.

As one of the Mayor of Newport's chosen charities, Elliot's Endeavours are among charities to benefit from a charity golf day being held next month.

On August 10, a charity golf day will be held at Llanwern Golf Club - to enter a team or provide sponsorship, email luke.bearcroft@llanwerngolfclub.co.uk

For more information on Elliot's Endeavours - visit duchenneuk.org/elliots-endeavours

If you value The National's journalism, help grow our team of reporters by becoming a subscriber.