Apologies for the poor administration but this is due to the fact that Tilly has spent a lot of time at Great Ormond Street lately so Debra is stretched between Tilly & Oliver.  To add, I have spent some time working 200 miles north of home in Sheffield.

Tilly has been struggling somewhat with the condition so we have had to increase her steroid dose back to 5mg.  We try to reduce the dose over a period of time, but when we get around 3mg the problems start again.  It takes Tilly some time to even get out of her bed of a morning and we, 9/10, have to add a dose of nurofen to her lengthy medication list.

To add to the above, we have just been informed that Tilly is suffering with kidney stones again and so potassium citrate has been returned to the list of med's.

We are due on the US over the coming months for Tilly's research programme, which she dreads bless her.  In addition we need to visit the hip surgeon again as Tilly's left leg is causing her pain and the hip may have dislocated further.

Will try to keep you updated as much as possible and thank you for taking the time to keep in touch with Tilly's progress.

Kind regards

Colin