It's always in our thoughts that it might be Effie's last ChristmasThis year we have launched our Christmas Appeal because we really need your support. We want more families to be able to make the most of their time together.

Effie Hadman has always loved Christmas. When she was two, she received lots of musical instruments for Christmas, happily handed them out to all the family and they played along to her favourite CD. It was a truly magical time.

Christmas is very different now. In January 2014 when Effie was just three and her little brother George was a tiny baby, her parents Carly and Paul were given some devastating news. “We were told our little girl had Late Infantile Batten Disease, a fatal neurodegenerative disease that would strip Effie of every ability.” Doctors said that this would leave her blind, bedridden and demented, before taking her life. “There was no treatment, no cure. We were devastated, numb, completely in shock.”

The Hadman familyDesperate and vulnerable, families like the Hadmans need support, which it isn’t always easy to find. “I wish we’d been able to get support and equipment when Effie needed it most. Everything takes so long to sort out.” 

This is a struggle that parents like Carly and Paul shouldn’t have to face. With your help we can continue to expand our work helping children and their families to access specialist local care services, day and night, seven days a week – when and where they need it.

Christmas is very different for the Hadman family now, and for two year old George, who adores his big sister. “Christmas is a very emotional time now. Each year, we try to make it as special as possible, but it’s always in our thoughts that it might be Effie’s last Christmas with us.”

If we see a present we think Effie would love, we don’t save it for Christmas, we give it to her straight away.

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Show your support today 

Mum’s like Carly don’t know how much time they have left with their child. Please act today and show your support for families like Effie’s.

We can’t change the diagnosis, but with your help we can work to ensure families get the help and support they need. Please support our appeal today.

Donate now