An 11-year-old girl who lost her grandmother and aunt to a rare disease has made it her mission to raise awareness of the illness.

Sivan Hermon, who lives in Elstree, is raising awareness of primary pulmonary hypertension - a rare lung disorder.

Both Sivan's grandmother and aunt died at the age of 38.

Her father's sister has early symptoms of the disease too.

Sivan, a year 7 pupil at Yavneh College, Borehamwood, said: "A few months ago I lost a very special, close and amazing aunt.

"It all started way before I was born. In fact my dad was the exact same age I am now when his mum died from a very rare disease. It took a year of tests before she was even diagnosed. "She came to London from Israel for a heart and lung transplant but unfortunately this didn’t happen in time and she died leaving behind my dad and his two younger sisters aged six.

"About 10 years ago, my auntie Ifat was diagnosed with the same disease as her mother. No one in our family knew that this disease could be passed on. Unfortunately, by the time she got the diagnosis, her heart was already damaged."

Borehamwood Times:

Sivan, in the black hoodie, and her family

Sadly, Ifat became critically ill. She had a lung transplant but then suffered from an infection. She died aged 38, leaving behind her husband and three-year-old son.

Sivan continued: "Ifat was a campaigner all the way through her illness to help raise awareness and money for the Israel Pulmonary Hypertension Association which is part of the European Pulmonary Hypertension Association.

"To honour her memory and to help others in a similar situation, I decided to swim the equivalent of a marathon in four weeks which is 390 lengths."

Sivan has already completed her marathon, at The Venue, but she will continue until her batmitzvah on November 2.

Sivan's mother Sarah said: "We're very proud of Sivan and her idea to raise money for a cause so close to our hearts. And she loves swimming too."