This year marks the 10th anniversary of my mum passing away, it is also the year I myself turn 29 which is the age she was when she received her first diagnosis. In honour of this I will be attempting the National 3 peaks challenge, climbing the tallest mountain in Scotland, England and Wales respectively, in 24 hours on the 29th August, to raise money to fund research and support for those affected.

While my mum was initially diagnosed with Dementia at 29, we ultimately found out after she passed away, that this was actually a symptom of the wider disease she suffered from, Neuronal Ceroid Lipofuscinosis, commonly known as Batten Disease. Batten disease is a group of rare, fatal, inherited neurodegenerative disorders. While it primarily affects children it can onset in adulthood in very rare cases. In adults this primarily causes progressive dementia, motor dysfunction, seizures, psychiatric issues and behavioural changes. Life expectancy for adults following the onset of symptoms is usually 10-15 years with a rapid decline in cognitive and motor functions.

Watching this disease gradually steal the person everyone knew my mum to be was devastating. Losing a loved one in this way is often referred to as a living mourning, where you grieve for a person who is still alive but emotionally and physically lost. If I am honest because of this I did not expect her passing to affect me as deeply as it did. I felt like when it came around I would be ready for it, comfortable in the knowledge that she was at peace. In reality it tore me apart and left me feeling like a piece of me would forever be missing. I think the hardest thing about finally saying goodbye to mum, was that I also had to let go of a deep and secret hope, that one day there would be a miracle cure and she would get better and could come home. I grieved and continue to grieve for the moments and memories that have been stolen from us, experiencing major milestones and just walking through life together.

I have chosen to raise money for the Batten Disease Family Association by doing the 3 peaks challenge. They work to ensure children and adults affected by this disease are able to live life to the full and to provide support and care to their families so that they do not have to walk this path alone. They raise awareness and promote research to aid in the support, care and ultimately cure for this disease.

I cannot begin to tell you how grateful I am if you are able and willing to donate to this cause.