In July this year, my husband and I will be taking on 3 peaks challenge for a charity close to our hearts Myaware.

We will be attempting to climb the 3 highest peaks in the UK within 24 hours, going from Ben Nevis to Scafell Pike and finally climbing Snowdon.

We are taking on this challenge, following our youngest daughter, Evelyns, diagnosis of Myasthenia Gravis in May 2024.

Myasthenia Gravis is a rare neuromuscular condition, with a diagnosis rate of 1 in a million children in a year in the UK. It can cause severe muscle weakness to the legs, arms, eyes, face, neck, swallowing and breathing muscles. Unfortunately Evelyn has and continues to experiences weakness in all these areas.

Myaware receives no government or NHS funding, and is the only UK based charity for Myasthenia. The charity relies on fundraising events and people’s good will. It has been a much-needed community for us, where we were walking through the woods, not knowing what to do. We would like to give something back, for everything they have and continue to support Evelyn and all of us with.

Please read our daughters story and share our page to spread awareness of Myasthenia Gravis and donate to our 3 peak challenge if you can.

Evelyns symptoms started in Oct 2023, with an eye droop, we visited the GP and Evelyn was referred for further investigations. Whilst we were waiting for these, Evelyn experienced some nasal speech and a bad cough, eventually being diagnosed with a chest infection in Dec 2023. During all of this Evelyn lost her ability to smile as we know how Evelyn would, she was falling over, unable to walk up stairs and at times was unable to get off the floor herself. As you can imagine we were in despair as parents. Evelyn was suffering and we didn’t know why. Investigations were coming back clear and no one was overly concerned, but we knew something was wrong.

In Feb 2024, we then met a physiotherapist who I can only describe as our Angel who I truly believe, Evelyn was meant to meet that day. She listened and advocated for Evelyn, referring her back to the specialist. Fast forward to June 2024, following a positive nerve and blood test, Evelyn was then diagnosed with Myasthenia Gravis.

The journey has been turbulent ever since for Evelyn, the whole thing has been life changing. Multiple hospital vsiits, being under the care of 3 hospitals, having several emergency hospital admissions, taking a variety of medications and meeting many different specialists who are involved in her care.

For a 10 year old this may be overwhelming, which it has been at times I’m not going to lie, this really doesn’t just impact physical health. But Evelyn is our warrior, and I am in awe and incredibly proud, on how she has dealt with this diagnosis, and all that comes with it.

Evelyn recently had surgery, where succesfully removed her thymus. We hope that this will offer a turning point for Evelyn and give Evelyn more of her life back. It really is a condition that strips so much of what you would want for your child. Our hope is she can go to school without the worry about things like how the walk up the drive is going to impact her, without worrying about speaking out in class, or worrying what PE might hold. Our hope is she can be carefree , just like a 10 year old should be.

We know that this is not something that is just going to go away we were told its going to be a rollercoaster when she was first diagnosed and it really is, and I know will continue to be, but we hope for more ups than downs.

So why are we telling you all of this. If we are honest, we really don’t want to have to.

But as parents, we feel compelled to spread awareness of this condition. To maybe help someone get diagnosed sooner, and to improve both healthcare & general public knowledge of the condition.

We also feel a sense of responsibility to raise vital funds for Myaware, as they give so much to individuals and their families. Myaware help fund research, and without that, we will never find that medication, that treatment which offers the miracle we are all hoping for.

Please donate, if you can.

Thank you for reading Evelyn’s story.