"I was lucky enough to meet Edith and her beautiful family on a recent transatlantic flight. Before I learned Edith has a terminal brain disease, I was already struck by this family, perhaps the most luminous and loving I’ve ever encountered. I asked Edith’s mother Sarah to create this fundraiser, because I truly believe we are all enriched when we help to enrich another person’s life. I hope you will join me in offering what you can to help these wonderful people travel for medical assistance, create magical memories with Edith, and relieve some of the financial burden for Sarah and Jeff." - Martha Beck
Edith is like any other four year old; determined, happy, energetic and cheeky. She lives with her mummy, daddy, baby sister and dog Flossie in the south of Oxfordshire. She goes to a local preschool and thoroughly loves everything on offer, from playing in the mud kitchen to scaling the climbing frame. She has an infectious smile and a wonderfully inquisitive personality!
In July 2018, after two years of investigations, Edith was diagnosed with a rare brain disease called Alexander disease. It is a genetic disorder only affecting around 42 people in the whole world right now. It damages the nervous system and is terminal with no cure. People with Alexander disease can begin to show symptoms at any age, but most appear as infants.
There is little known about the disease in the UK and doctors have struggled to give us accurate information about the disease. We know that it is progressive and that Edith will slowly lose the skills she has now, needing more care and support from the important adults in her life. At the moment her care focuses on physiotherapy, speech therapy, adaptions to help her physically cope with her environment and 1:1 support at school to help her communicate with her peers. Despite all this she continues to make exceptional progress and is fiercely independent too.
In America, doctors are doing vital research into the disease and are putting their amazing expertise and energy into developing a way to stop the disease from further progressing. It’s our only chance and it gives us the glimmer of hope we thought would not be possible. In June 2019 we travelled to America to meet with the specialists and we hope that Edith will be considered for their trial.
As her parents we are determined to ensure that Edith’s life, however long, is full of wonderful experiences and happy memories for all of us to share and love. it’s not about big gestures and expensive days out, it’s giving Edith the opportunity to do whatever any other little girl enjoys, whilst acknowledging that we have no idea how long she will be well enough to enjoy these experiences. We have made the decision not to tell Edith so that she lives a life unburdened by the knowledge of a terminal illness.
Our friends kick started a fundraising campaign with a half marathon and now we are doing everything we can to raise more funds to help us make precious memories with our beautiful daughter and travel to America again in the future.