A charity that supports children suffering genetic disorders is having its annual fundraising day next month.

Genetic Disorders UK is holding Jeans for Genes day on September 22, a day that aims to the raise money for the estimated one in 25 children affected by a genetic disorder.

These vitals funds could help the 30,000 babies and children who are newly diagnosed in the UK each year.

Children like Poppy Gee from Surbiton, who was just three days old when she was diagnosed with a severe form of the skin genetic disorder Epidermolysis Bullosa (EB).

Poppy’s condition is so severe that when she was born she had no skin on her right foot and entire left leg and had to be given morphine to control her pain.

Poppy’s mother Kate said: “The pain suffered with EB is unrelenting as areas of the skin become an open wound.

“It is a group of inherited painful skin conditions that make the skin very fragile, causing it to tear blister from the slightest touch.

“For those severely affected, all it takes for the skin to blister is the smallest friction caused by turning your head on a pillow.

“For sufferers, it can feel like having a burn that never heals. Each day the skin needs to be checked for new damage and blisters.

“Each blister needs lancing, before moisturising, in a process that can take hours.”

The condition gets worse with age and there is no cure or treatment, with an estimated 500,000 people with EB worldwide.

Financed by the Sohana Research Fund, Poppy has had three rounds of stem cell therapy to treat the disorder.

The therapy began when Poppy was two, and was repeated six months and a year later and fhe family have seen a significant improvement in Poppy’s skin.

Kate said: “It’s so hard for Poppy that she’ll never have a playdate where I can drop her off at another friend’s house.

“She can go to parties but we have to watch her and often leave early if it gets boisterous or hot. We fear that her feet will become so damaged she can’t walk.

“She can only walk for a few minutes and goes to school in a buggy.

“Constantly lifting her is becoming a challenge and we are getting to the point where she will need a wheelchair and specialist facilities for bathing and dressings.”

Despite living with the constant pain, Kate describes her daughter as “incredibly happy”.

The family hopes for Poppy to be able to take part in another trial such as gene editing, and are determined to open up the conversation about EB, to broaden the public’s understanding of her condition.

To get involved at school or work or in your community go here.

Oh, and wear jeans.