Andrew Evans ran the London Marathon in 2026 to raise awareness of CHD2, with Mencap benefiting from the donations he raised (CHD2 UK is not yet a registered charity). Below is a copy of the story of his daughter, Thea, which he shared during the fundraising stage.
Originally published at https://2026tcslondonmarathon.enthuse.com/pf/andrew-evans
In November 2015 we welcomed our first born, Thea, into the world. Full of the happiness and excitement of new parents, we had no idea of the challenges that she would go on to face.
At 3 years old, having been late to talk and walk, Thea began to suffer seizures, sometimes causing her to simply freeze, at other times causing her to ‘drop’ and hit her face or head on anything close. 2 years of different anti-epileptic medications and with that seemingly starting to be managed, Thea started school. From there it became increasingly clear that things were not going to be easy for her. As her first year progressed Thea was finding it increasingly hard to do the things that the others in her class were able to. Able to talk but unable to have a conversation meant she could not make friends. Unable to do the things the others could in class she found learning almost impossible.
Multiple referrals and appointments later, we went to see a doctor, assuming we would be told Thea was autistic. That answer came, but was followed by the explanation that Thea also was classified as having a severe learning disability. Confused and seeking clarity, the doctor explained that this meant there was a limit to what Thea was capable of learning, doing and coping with, and would be for the rest of her life.
Further tests revealed Thea suffers from a genetic condition linked to her CHD2 gene – the symptoms of which being epilepsy, autism and learning disabilities. CHD2 is so rare in diagnosis there is no charity specifically aimed at it in the UK.
Thea is more often than not a happy 9 year old girl, who is lucky in many ways. She experiences all of the symptoms, but there are others with far more life restricting levels of any and all of them. She is surrounded by a family who love her, and thanks to them and some of our remarkable friends, she gets to do and experience things just like many other 9 year olds.
The difference is that she will never grow and learn from those experiences into a confident and independent young woman. As parents we have struggled with many aspects: the realisation that something wasn’t right, diagnosis upon life changing diagnosis and the reality of the final outcome. We work hard to give Thea everything she could ever want or need, but the looming long term fear is what will happen when we are not around.
People with a learning disability face inequalities in every area of life with almost 1 in 3 young people with a learning disability spending less than 1 hour outside their home on a typical Saturday. They face barriers finding a job or purpose, accessing activities in their local community and receiving good quality healthcare. Mencap tackles these issues head on by providing support in a way that meets individual needs and encourages greater independence.
By supporting me with your donations you are not going to make Thea better. That isn’t what I am doing this for. Partly this is about raising awareness of a condition that has such a profound impact. Partly it is another step in the process of me trying to process and cope with all of this as a parent. Having spent years not really discussing it, writing it all down and posting on the internet (and actively asking people to read it) requires a hell of a change in mindset.
Mostly though, this is about helping me to try and ensure when Thea, and anyone else growing up with a learning disability finds they have outlived those who stand for them, that there is still a system and a group who will do exactly that.
I want to know I did all I can to try and ensure that Thea, and those like her, get a live a life of dignity, happiness and fulfillment. Thank you for anything you can give to help me try and achieve this.
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