Dear all

An article appeared in a local paper last week stating the following:

'The team took to the pitch in Grays last Sunday to raise cash to keep eight year old Tilley Bailey, from Hutton, Brentwood, convalescing in Washington'.

'She has just undergone complicated surgery - not available in Britain - to correct a rare genetic condition'.

'Tilley's appeal has so far raised £28,000 towards the £50,000 needed for surgery and the stay in America'.

'Tilly, mum Debbie and brother Oliver have to stay there for three months while she recovers from her operation and undergoes intensive physiotherapy'.

All those that regularly read the website updates and all that have helped us will know that the above statements are totally incorrect.

We are very upset by the above for the following reasons:

1) Tilly's operation will not, very unfortunately and upsettingly, cure her rare genetic condition.  This has upset me very much as I only wish this was true for Tilly but the fact is there is no cure.

2) The operation is for a separate condition which is not linked to the main genetic condition (CINCA/NOMID).

3) Tilly has not had the operation, we are still waiting for a date and expect to hear next week.

4) When we go ahead, Tilly and Debbie will be on their own on Washington and Oliver will remain here with me.

5) Tilly will be in Washington for up to 6 months and not 3 as stated.

6) The kind people that have contributed to the Fund have reached over £50,000 and not £28,000 as stated.  The website, which has been updated regularly, confirms the amount as £50,000.

7) Tilly is 8 and not 9 years of age.

8) Tilly is not spelt 'Tilley'

This is not the first time this has happened and the last time they received a telephone message from me telling them the problem(s) and telling them that any wording of articles about Tilly should be checked with us before publication.

This is upsetting and sending a very confused message to local people who read the paper concerned and those that are helping us and see Tilly.

I will keep you posted on further action we take with this sad issue.

Colin