It's been a few years since I slept outside in the pouring rain overnight for charity and we've been inspired this year to do something as a family for another family.

Over the next eight weeks, we will be getting out walking Rosie (mostly me on account of my arthritic joints and lack of bike) and biking (mostly Andy to escape the noise at home), whilst dragging the kids with us and the aim is to do at least 1000 miles. To make it a little more fun and to draw attention to our cause, we will be wearing something that gives us joy and motivates us to keep going, even on the tougher days. Poppy and I have chosen the sunshine, Arlo his beloved Lloyd Lego Ninjago outfit and Andy his Yoshi Super Mario head because he still bangs on about racing round Tokyo in Mario Karts.

Why you may ask? So many reasons have collided to motivate us. Partly because like so many other children, our two are hard to motivate to get outside during Lockdown so we all need a worthy and motivating purpose. Partly because Chris Brannigan's bearfoot walk for Hope for Hasti captured all our hearts and minds. Partly because “Josh from across the road“ inspired us all by cycling 600 miles with ET last summer for this very charity. But mostly because an eight year old girl called Hasti, and others like her, deserve to live their best life and her family need help in raising money to secure vital research for her and other children with rare diseases. I know from my work that rare diseases can be so hard to get help with given the lack of funding, research and knowledge.

As parents, we know our answer to Chris' question "How far would you go for your child?" is definitely to the moon and back so we are kicking off by taking part in their Journey to the Moon Virtual Challenge. These are tough times we know but every penny counts and will be so gratefully received so please do support us if you can.
Hasti has a rare genetic disease, Cornelia de Lange Syndrome (CdLS). CdLS is characterised by reduced growth, global developmental delay, feeding problems, speech and language difficulties hearing problems and, in many cases, limb abnormalities, but it is rare for children with CdLS to become adults who live independent lives, often needing round the clock care for their entire lives. No cure or treatments exist for this terrible disease which occurs in just one in every 30,000 live births, but we are committed to change that so that all children with CdLS, both now and in the future, can enjoy better lives. But to do that, Hasti's family need your help to pay for the research to create a treatment for this disease.