Dear Family & Friends,

This June is Myasthenia Awareness Month and we’d like to help make a difference.

The charity MyAware is celebrating 50 years of supporting those affected by this rare neuromuscular autoimmune condition. (There are approximately 12,000 people living with Myasthenia in the UK).

As most of you know, our daughter Jess was diagnosed with Myasthenia Gravis last April, just before her 20th birthday. It stopped her in her tracks, quite literally, as she had just embarked on another solo backpacking adventure around South East Asia.

Her initial symptoms included facial weakness, arm and leg weakness, and after collapsing a few times she came home, having been away for just 10 days.

We are incredibly lucky to have had a wonderful NHS GP who was on the ball, and after requesting the necessary blood tests, Jess’ diagnosis was confirmed. This in itself is amazing, as this condition often goes unrecognised or is misdiagnosed for years; delaying the management of symptoms.

The rest of last year was a steady stream of hospital appointments, with Jess undergoing multiple treatments for days at a time, including blood plasma exchange, intravenous immunoglobulin, multiple drug regimes, and thoracic surgery to remove her thymus gland at Southampton General Hospital.

What we have learnt with this condition, is that it is the long game. We won’t know if the multiple treatments have been effective for months or even years ahead.

There is currently no cure for Myasthenia Gravis, but research continues and new treatments and drugs are currently being trialled.

Jess has shown incredible strength throughout this last year and has been an inspiration; learning to live with Myasthenia Gravis, adjusting her lifestyle along the way.

Life is getting back to a new ‘normal’. Jess has recently embarked on a new job in a local law firm, who are wonderfully supportive and she’s enjoying her new role.

We’re incredibly proud of Jess, the strength and resilience she has shown has been amazing.

We’d like to help raise awareness of this rare condition and most importantly raise funds for the wonderful charity who provide essential support, advice and also fund research for further treatments. Hopefully one day there may be a cure.

As the charity was founded in 1976, we’re on a mission to raise a whopping £1976.00 in the month of June, AND we’re planning on completing 1976 miles, and we need YOUR help to reach both targets!!

Thank you so much in advance, and thank you family and friends for your wonderful support during this past challenging year.

Lorna, Toby, Ollie & Jess xxxx