“To be able to help our community and familes who need some kind of support is something we thoroughly enjoy and will always want to do!
– Evo Team –
We are the Rich family from Throckley in the north east of England.
Matthew, Gail, Louis, Nicole & Jessica.
Both Nicole & Jessica we’re diagnosed with an ultra rare life limiting condition called Batten Disease, in late 2016.
Shortly after, we set up The Nicole & Jessica Rich Foundation to raise awareness of this devastating, yet widely unheard of condition, to raise funds to support the girls needs & to make a difference to the Batten Disease community.
Batten disease in a neurodegenerative condition which affects the brain & nervous system. There are 13 known variants. There is no cure & until recently, there has never been a treatment. We are thankful that a treatment is available for the type that our daughters have which is CLN2, which involves travelling to London every two weeks for a brain infusion which is an enzyme replacement therapy.
Batten Disease takes away childrens skills and abilities, brings on epilepsy, dementia an loss of sight. Children’s health deteriorates until they become fully dependent on their parent or carer. It is the most cruel and devastating condition and we will never stop until a cure is found for all types.
We cannot control the condition but we can control how we respond.
Our brave daughters are out inspiration and our reason to stay strong.
We don’t look too far into the future and take each day as it comes, always with love and gratitude in our hearts.
“Anything is possible with hope in your heart”
If you would like to follow our journey, we would be so grateful.
Our Facebook page ‘Nicole & Jessica’s Batten journey’ where we write about experiences and hopefully help others who maybe going through something similar.
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