Tilly’s appeal fund has been set up to help raise funds for Tilly to be able to take part in a unique Research Programme in Washington DC for her main condition and for Tilly to have an operation that could help her to walk unaided.

The operation and subsequent rehabilitation will probably take around 6 months and can only be done in the USA as the UK specialists have denied her this life changing opportunity.

The fund has been set up following the guidelines set for Appeal Funds, and monies drawn from the fund, following travel and treatment(s) etc, can only be withdrawn using the signatures and passport books of the two designated trustee’s.

The difference between an Appeal Fund and a Charity Fund is that and Appeal Fund can be set up for an individual whereas a Charity Fund is set up for multiple people with a condition/plight.

Other parents with children suffering with CINCA/NOMID have set up Appeal Fund’s which has prompted us to do the same to try and seek the medical expertise offered in the USA to give Tilly the chance of an easier life whilst fighting this awful and terminal condition.