Tilly was rushed to Great Ormond Street on the weekend and is in a serious condition.   There are a number of complications including pneumonia and she is on permanent oxygen supply and being monitored very closely by a large number of Teams. 

This is a very difficult period.

Due to pneumonia being missed as diagnosis in the UK, despite 2 visits to doctors and being told it's a sore throat!, Tilly's one week trip for treatment at the NIH in Washington DC turned into a month!!!

Tilly started a new medication, but we had to wait for the pneumonia to clear before the infusion, and we are now hoping for some upward movement in both pain and mobility.

In addition, it is now believed that Tilly has a totally unique condition, a one off, and we will know more hopefully in 6 months following genetic testing at the NIH.

Tilly is now struggling with:

Cannot lift her arms above waist level
Neck pain due to curving of the spine
Left hip completely out of the socket again
Struggling to grip items or for prolonged periods
Condition attacking various parts of the body

The need to attend the NIH is increasing and we will need to go back within 6 months. 


Not good times for Tilly and difficult to watch as loving parents.

The need for fundraising to ensure we can take Tilly to the NIH is more evident than ever so any help with ideas will be greatly appreciated.

Take care and thanks for reading about my beautiful daughters struggle with life.