Run21 for Alice

I met Alice in 2015 through my best friend, Flora. Alice is Flora’s little sister, and kind of the little sister I never had too. Alice has M.E (Myalgic Encephalomyelitis) and it affects every cell in her body. Alice went to bed at age 11; she is now nearly 21 years old, bedridden and lives in darkness 24/7.

Alice has the most beautiful, creative mind and soul I’ve ever met. She is the figure of strength, determination and utter resilience to persevere with this life destroying disease. She is the reason behind Run21…

Why Run21?

Alice turns 21 in May this year. We want to celebrate Alice’s 21st birthday by showing her how much she means to us.

21 days

21 runs

21 km

Between us we’ll be running 21.1km everyday (10.55km each), for 21 days in the South West of England. That's the equivalent of a half marathon between us everyday. A total of 221km each in 3 weeks (a tad more than our avg 15km a week!) We’ll be living in a van, travelling to a new location everyday, virtually bringing Alice with us to run in some of her favourite places.

We’re aiming to raise £2100 for M.E Research UK, whilst celebrating 21 wonderful years of Alice, from the 13th April – 3rd May.

What is M.E.?

M.E. is a chronic debilitating condition that affects many systems in the body. Symptoms include profound fatigue that is unlike normal tiredness, cognitive difficulties (‘brain fog’) and difficulty sleeping. Severe M.E. sufferers often experience constant pain, headaches, nausea, digestive problems, and hypersensitivity to light, sound, smell, touch and other stimuli. They often have all over body pain.

Around a quarter of those with M.E. are so severely affected that they are housebound or bedbound. They can be completely reliant on caregivers for everyday tasks, such as using the bathroom or eating, and some even need to be tube-fed. The very severely affected like Alice can sadly lose their lives.

Unfortunately, the healthcare provided to these patients is shockingly poor, and many remain without the support they desperately need. In the most severe cases, M.E. can even be fatal, and there is currently no known cure.

Alice’s Background Story

Alice was a vibrant and energetic child until she fell ill with chickenpox at the age of eight, followed by glandular fever a few years later. After that, she developed post-viral fatigue and, at just 11 years old, she was diagnosed with M.E.

Alice went to bed at age 11; she is now nearly 21 years old, still bedridden and lives in darkness 24/7.

Alice is hypersensitive to light, sound, touch, taste, smell, and vibration. Her body is in constant pain, and she suffers from numerous debilitating symptoms which fluctuate throughout the day and night. Her body is so sensitive that few pain medications work. Tragically, no NHS hospital in the country will treat a very severe M.E. patient, due to a lack of understanding about the illness, often patients are not believed, leaving the patients, carers and families feeling frightened and abandoned.

Alice is desperate to live her life with her family. Alice is so ill that she cannot even bear visits from her siblings, knowing only too well that it will worsen her condition. Her mum is her full-time caregiver, and she can only tolerate brief visits from her father to say goodnight.