Three years ago, West Malling mum Louise Robey was a keen runner, jogging around 15km as part of her weekly exercise regime.

But everything changed when she developed one of the world’s rarest diseases – a life-limiting lung condition that means she has to wear a portable oxygen cylinder to help her breathe.

Now the 38-year-old is organising a race to raise money for the charity that has helped her cope with her illness and is leading research into a cure.

Lymphangioleiomyomatosis, known as LAM, causes cysts to grow in the lungs, preventing them from functioning properly.

It affects just 125 women in the UK and is incurable, with a lung transplant currently the only effective treatment.

Mrs Robey, a full-time mum to Isabelle, nine, and Harry, seven, was diagnosed last August.
She said: “Three years ago, I was running 5km three times a week with a group of school mums. I noticed that I really struggled with my breathing but always managed to finish.

“I couldn’t work it out as I’d always been fit and some of the not-so-fit mums were way ahead of me!

“I couldn’t work it out as I’d always been fit and some of the not-so-fit mums were way ahead of me!" - Louise Robey

“I eventually stopped running as it became too hard, and over the space of a year even climbing the stairs left me breathless.”

Louise was put on steroids and a new drug called Rapamycin, which can slow down the rate of lung-function loss.

She said: “Thankfully, my LAM is now stable and hasn’t progressed in the last year. I now wear oxygen when mobilising, so this helps with the breathlessness.”

Now she is hoping to attract up to 100 competitors to take part in a sponsored Race for LAM at Leybourne Lakes Country Park on May 9, from 10am.

There are 5km or 10km routes, and there is a prize for the person who raises the most money.

To sponsor her visit https://www.justgiving.com/Louise-Robey