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The Nicole Rich Foundation

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Our two beautiful daughters were diagnosed with Batten Disease, an extremely rare neuro degenerative disease in late 2016. Nicole was diagnosed in September 2016 at the age of four & Jessica, 3 months later in December, when she was only 15months old. It is the most horrendous disease which takes away their ability to walk, talk & feed themselves, as well as taking their sight. Children with CLN2 type of Batten, which is the type Nicole & Jessica have, who are no receiving treatment, are not expected to live into their teens.
In January 2017, Nicole began pioneering enzyme replacement therapy at Great Ormond Street, which has given us hope, when we once had none. The treatment has been proven to slow down the progression of the disease, but it is not a cure. A cure is out there, we just need to find it. Jessica enrolled onto a Sibling Trial in Hamburg Germany in May 2017 where she became the youngest child worldwide to receive this treatment. Until recently, we were travelling between Hamburg and London then a few months  Jessica recently joined her big sister in GOSH when they opened up the Sibling Trial in the UK to allow Jessica to receive her treatment with her sister.

We will not let Batten Disease bring our family down. Our children, Nicole, Jessica & our beautiful son Louis, need their Mammy & Daddy. We continue to live each day with happiness, love & positivity in our hearts. We focus on things within our control & one of these things is raising awareness of Batten Disease. It is a widely unheard of condition, yet it is the most brutal condition for anyone to have to endure, never mind a child.
We have teamed up with the Batten Disease Family Association (BDFA) to work together to help raise awareness and raise as much money as possible. All fundraising donations will be divided between the BDFA, as well as providing help towards the ongoing cost of the care & support for Nicole & Jessica as their needs change and also allowing us to go on memory making adventures as a family.

This account is managed under the auspices of the Batten Disease Family Association.

Charity No: 1084908

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