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I (and several other brave peeps) are jumping out of an aeroplane on the 26th/27th May, hopefully strapped to a professional, in aid of the James Hopkins Trust, a wonderful charity which provides practical help for severely disabled, life threatened and life limited young children with nursing needs in Gloucestershire.  All of this is free to the families receiving this help.

Our daughter Elsie was diagnosed at 7 months of age with Krabbe's leukodystrophy, a rare, genetic, degenerative condition for which there is no cure and which is usually fatal by the age of two.  She died 11 days after her first birthday.  Soon after Elsie's diagnosis a nurse was provided for several hours a week to give me some free time - usually to do the grocery shopping, but also just to give me a break.  Elsie's condition was such that it was difficult to leave her with anyone who did not know her well.  As Elsie's medical needs altered our respite plan changed too, we were given overnight respite in our own home so we could get an unbroken nights rest.

The Trust also runs a creche at Kites Corner which I was able to make use of on several occasions.  I also met several other mums there, it has been invaluable meeting and getting to know other families in a similar situation. 

The support from everyone at the Trust over the past two years has been great, I still visit every week for coffee and a chat and end up staying all day.  Thank you, you know who you are!

The Trust is completely funded through charitable donations and I do not believe that there is any other organisation in Gloucestershire able to give this level of support free of charge, so every penny counts!!!

(And no matter how much you offer to donate, I will NOT be doing the jump WITHOUT a parachute AND a professional).

THANK YOU

If you have any questions about the James Hokins Trust, Krabbe's and our experience or anything that I might be able to help with, please ask.

www.jameshopkinstrust.org.uk