When our wonderful daughter Frankie was just 12 months old she was diagnosed with the rare neurodevelopmental condition- Desanto Shinawi Syndrome (DESSH). This condition affects her brain development, learning and behaviour.

She is one of only around 200 people in the world with DESSH and when she was diagnosed we were told there was no treatment.

But there is hope! Only two weeks after Frankie was diagnosed a ground breaking study from the Mayo Clinic in America showed a potential treatment that could help children like Frankie.

Guy's and St Thomas' Hospital are working to launch a UK clinical trial, but sadly this cannot be funded by the NHS.

We have therefore set up Rare People- The research Charity and are fundraising to fund the trial.

Once we have completed the DESSH trial we hope it can be used as blue-print for similar trials in other rare conditions that can be funded by Rare People. There are over 500, 000 people in the UK living with rare neurodevelopmental conditions.

Thank you so much for your help, we are very hopeful that the treatment might change Frankie's future