Thoughts from the Astwell Benefice

Sunday 12th August 2018  - Eleventh Sunday after Trinity

Bill and Judith Elkington of Helmdon are helping their family cope with a devastating diagnosis for their young granddaughter Ellouise. Their daughter, Emma, has written this about what they are all going through:

“Our world has been turned upside down in the last 2 months as our youngest child Ellouise has been diagnosed with an extremely rare chromosome condition. So rare that there are only 9 registered cases in the world. Ellouise has the rare chromosome condition (3p26.3-25.3 deletion). A condition with known complications including heart defects, kidney and bowel issues, speech problems, sight and hearing issues, feeding problems, cognitive and development and degeneration issues to name just a few.

Our only source of information and support has been the charity “Unique” who have shared medical research and put us in touch with the 8 families. Their support has been invaluable enabling us to reach out to others as we try to process this news and understand our millions of questions, hopes and fears, and arm us with the critical information needed to push to get the relevant support and screening in place. We do not know what the future holds for Ellouise but with “Unique’s” help we know we will fight for the support needed to enable Ellouise to thrive in her own unique way.

Alison, our cycling-mad aunt, is performing a wonderful act of love and kindness to help raise invaluable funds for “Unique”. To enable them to continue to support families and children like Ellouise face the uncertainties, lack of understanding and knowledge, and celebrate their achievements; as each and every chromosome child is amazingly Unique.”

Video link: https://youtu.be/79gCNA9Wfgk

Charity link: https://uk.virginmoneygiving.com/fundraiser-display/showROFundraiserPage?userUrl=AlisonJane2&pageUrl=1