Leanne and her boys came to meet me at Watermead Country Park in Leicester this weekend for a few photos and a spring walk. Theo, four, clearly adores hid older brother Ellis, but wasn’t hanging about to wait for anyone whilst he had the chance to be off exploring!
Leanne was the deserved winner of my Mother’s Day competition following nominations from two of her friends for her kindness and the amazing way she keeps smiling through the most testing of situations. We are all put to the test as mothers, usually on a daily basis. But Leanne has had to cope with one of the most trying situations that can be thrown at a parent. On meeting her, you wouldn’t know it. She struck me as such a relaxed and happy mum at her location photoshoot.
Leanne and Richard’s eldest son, Ellis, was born with a rare chromosome disorder called MECP2 Duplication Syndrome. A condition so rare, that, although they were aware that Ellis had developmental issues, it went undiagnosed until his 4th birthday.
Discovering Ellis may never walk or talk was quite a blow to his parents. Along with daily epileptic seizures he is very susceptible to chest infections which can be the most dangerous element of his condition. But Leanne and Richard soon found the 401 Project and a support system within the UK. They adopted a fighting attitude to do everything they can for their son and others in his situation.
The couple have been campaigning and raising awareness of MECP2 conditions since 2013, including Richard and Ellis’ uncles raising a huge amount by cycling to Leicester City football away games for the whole season. Their efforts have gone directly towards funding the research project where there has been a breakthrough in research and it is now hoped that a cure will be able to reverse the symptoms of Ellis’ condition as well as other MECP2 related disorders.
Richard will, this year, once again be cycling with a team of 18 riders to raise money. This year, they cycle from the Watford football ground to LCFC in time for the Leicester v Watford game on Saturday 6 May. Anyone wishing to donate can do so via Just Giving and keep posted with ride updates on the TextEllis facebook page.
Here are a few of the photos of our adventure.