“It’s always in our thoughts that it might be Effie’s last Christmas with us…”
Effie 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 Hadman 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.”
There are more than 50,000 children and young people like Effie living in the UK with health conditions that are life-shortening – and the number is rising. That’s one in every 270 children – the equivalent of one in every school.
Nothing can prepare you for the shock of hearing the news that your child is going to die before you. It’s an incredibly distressing and confusing time. Parents can be left feeling very isolated and alone, without a sense of what the future holds. But together we can be there to support families on the journey ahead, and make each day – and every Christmas – as special as possible.
Please make a donation today, to be there for families like Effie’s this Christmas and for every step of their journey.
Parents like Paul and 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.
Caring for a child with a life-shortening condition turns family life upside down. It can be an incredibly lonely time, not knowing where to turn. For Carly and Paul, it was a huge learning curve. “Our hopes and dreams for our little girl’s future were destroyed. Day to day life became unrecognisable… We were suddenly in a world filled with new medical terminology, therapists, seizures, wheelchairs, feeding tubes, incontinence… I’m not a doctor or a nurse, but I’ve suddenly found myself caring 24/7 for a terminally ill child. Gone are the simple things like Effie snuggling into our bed and watching TV together.”
It isn’t always easy for families to get the support they need – it can be a real struggle for parents like Carly and Paul, something they shouldn’t have to face. “I wish we’d been able to get support and equipment when E e needed it most. Everything takes so long to sort out.”
We know that life could and should be so much easier for these families. 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.”
Please show your support for families like Effie’s this Christmas by going online totogetherforshortlives.org.uk/Christmasappeal, by completing the enclosed donation form or calling 0117 989 7820.
Carly and Paul’s lives were shattered when they received Effie’s diagnosis. But they promised they would give E e the best life possible and that’s what’s kept them going.
“We don’t have long left with Effie – each day is so very precious.”
We can’t change the diagnosis, but with your help we can work to ensure families get the help and support they need. Families like Carly’s deserve to have quality time together to make memories that can be cherished forever – to be remembered when that Christmas comes when they no longer have their child with them. To make the most of every Christmas, every moment, together.
With best wishes,
Together for Short Lives