Many of you may not be aware that over the past decade, our Dad, Simon, has been living with a condition called Myasthenia Gravis. For the month of January, the 4 of us have decided to give up alcohol and donate what we would have usually spent to MyAware. It's a great opportunity to raise awareness of a rare condition and to support a charity that have provided immense support to Dad over the past decade. 

We would be grateful if you would like to make a contribution, or help us raise awareness by reading the blurb below to understand more about the everyday challenges Dad faces. 

In Dad's Words...

I have been living with MG since my diagnosis a decade ago. It is a chronic illness that causes weakness in the skeletal muscles that control breathing and other moving parts including eyes, arms and legs. It can be my best friend and worst enemy all in one. 

I try to explain to people who don't know, it's like living with a car with the fuel warning light permanently on or an electrical consumer unit at home where the fuse is always tripping. A real pain to live with on a daily basis! 

You end up cancelling commitments, sometimes at the last minute, and feel a fraud for doing so because 'you look fine'. 

At my worst, when I couldn't coordinate my eye movements, see through my right eye, and would sleep for 12 hours straight to awake feeling exhausted, I was told that one day I would see this illness 'as a gift'. My goodness, did I laugh out loud, when I was told that. 

Years later, and with the benefit of hindsight, I can now see the wisdom of these words. I see life differently now and accept that the changes brought about were essential to move forward. 

Each day, I am grateful and humble for what has been and for what is to come. Most importantly, I'm grateful to my wife, children, family and friends who have sought to understand and encourage when I have experienced MG related challenges and who continue to support me now. Thank you. 

I have experienced the most amazing, kind and compassionate care from NHS professionals at various locations in London and SE Hospitals, including my kind, local GP. Plus, care from Neuro Physiotherapists, Pilates, Yoga and Personal Trainers (Rosie - that's you!) who simultaneously drive me insane with their muscle coordination routines but get me out of bed every morning! 

They continue to look after me, my daily medication and periodic reviews to ensure that my MG is well controlled and allows me to do those things in life that are important to me and make me smile. 

Myasthenia - what is it? 

Myasthenia means muscle weakness. It affects the muscles that let you move but not the automatic ones like your heart that you don't have to think about. Your brain tells your muscles to work, but the message doesn't get through. 

Myasthenia gravis is an autoimmune condition where antibodies which normally fight infections go wrong and attack the communication system between the brain and your movement muscles. It can be fatal and affects all ages and genders.

The symptoms of Myasthenia include muscle weakness which makes day-to-day activities like walking, smiling and talking very difficult. When swallowing and breathing are affected, this can lead to a medical emergency. 

We think there are approximately 12,000 people with Myasthenia in the UK, but there are no accurate published figures. 

The charity, MyAware work extremely hard to raise awareness of Myasthenia, as it is a little known condition. They provide support for people living with Myasthenia and their families, whilst offering advice and tips for living with these conditions. They also fund vital research that brings us closer to finding a cure. 

Thanks for taking the time to visit my JustGiving page.

Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving - they'll never sell them on or send unwanted emails. Once you donate, they'll send your money directly to the charity. So it's the most efficient way to donate - saving time and cutting costs for the charity.