In 2017 our beautiful girl, Solana, joined us to create our little family. It has been a very long journey with a lot of heartache and so much unknown. In 2018 Solana was diagnosed with a very rare genetic disorder called GRIN2A, which has had a major impact on her life quality. She has ongoing epilepsy, which has seen many hospital admissions and a few stays in ICU for a month at a time, as well as severe global developmental delays. Despite all that she goes through, Solana is the happiest little girl in the world and wears a permanent smile that enriches our lives on a daily basis.

Ever since we received her diagnosis, it has been an ambition of mine to start a charity to help find a cure for this terrible life altering disorder. My dream finally came true in March and GRI-UK was formed. We aim to raise money to put towards research to help find cures and improve the lives of all children living with GRI Disorders. To kick-start our fundraising off, I have decided to take on the challenge of running from London to Brighton, a total of 100km‘s and would love to raise as much as I can in order to get our charity off to the best start possible. This is an extremely exciting time for the GRI Community and we live in hope that one day we will find a cure to help our children❤️ So please help by donating anything you may have to spare, it doesn‘t matter how small as it all adds up, and it’s all going to be put to a very good cause that is obviously very close to my heart! Thank you so.

A little about GRI-UK: The chairty has been formed by 8 Board Members all of whom are either parents or grandparents of children living with this life debilatating disorder with the aim of raising money help to advance cures and treatments for GRI gene disorders by bringing together patients, parents, family members, medical professionals, researchers, scientists, pharmaceutical, bioscience and academic communities; support families so that those diagnosed can lead the best life possible; and raise awareness of the symptoms and needs of people with GRI disorders, to help enable better and faster access to diagnosis and treatments within the NHS.