Last July our beautiful one year old Granddaughter Frankie was diagnosed with the rare condition- Desanto Shinawi Syndrome (DESSH). There are only 200 people known in the world to have DESSH, it causes learning disability, developmental delay, behavioural issues, speech and mobility difficulties and various health issues such as epilepsy.

Shortly after Frankie's diagnosis an AI programme was used to look for potential medicines that could be repurposed to treat rare medical conditions and a potential treatment has been found for DESSH. One child in America has been shown to have vast improvements following this treatment.

We are fundraising to help fund a trial for this treatment in DESSH for Frankie and others like her.

We will be walking 200 miles coast to coast - one mile for every known person with DESSH!