Buy a light and brighten the life of children with life-threatening conditions this Christmas

December 10, 2019

As Christmas shoppers are out in force in towns across Cambridgeshire, East Anglia’s Children’s Hospices (EACH) is asking well-wishers to add just one more present to their list. The gift EACH need won’t require any wrapping but it will mean so much to the lives of local families.

The charity, which cares for children and young people with life-threatening conditions across the region, is asking supporters to buy a light on their virtual sensory wall. The cost of buying a light starts at just £5 and there’s space to leave a personal message remembering a loved one or to show support for families who use EACH.

Buying a light will allow EACH to continue to support families like Effie’s. Effie was diagnosed with Batten Disease, a rare neurological disease in December 2013. She died in February 2017, aged just six years- old.

Effie lived with her family – mum Carly, dad Paul, and brother George, in Cambridgeshire. The family received care and support from EACH at Milton during Effie’s illness and at the end of her life.

Carly and Paul, said: “Effie started life as a healthy little girl. She loved walks in the forest, singing and dancing. She had a wicked sense of humour and was the kindest girl imaginable. At two-and-a-half, Effie had a seizure in the bath. She tested positive for Batten disease. Effie’s condition deteriorated quickly – by age four she couldn’t stand or speak, she could no longer swallow and had a feeding tube.

“We started frequent stays at Milton. Effie needed 24/7 care so staying at EACH meant she was cared for whilst we had some much-needed sleep. Music therapy sessions became the favourite part of Effie’s week. As the disease progressed, Effie appeared to have little awareness of her surroundings – except during music therapy! We would tap out a beat and Effie would tap the beat back – in a world where our princess was blind, bedridden and suffering severe brain damage, moments like these became priceless.

“Just after her sixth birthday, Effie went into a seizure that lasted six weeks. EACH helped us bring her home and worked with us to prepare for the end of her life. She spent one last Christmas at home with her family. She passed away in February 2017, aged just six-and-a-half.

“To need to use a children’s hospice is every parent’s worst nightmare, however, when you get there, it is the most beautiful place imaginable. It’s a lifeline to parents going through the worst possible journey and gives families the support they need. Most importantly for us, we were able to make priceless memories we will treasure forever.

“There are no words to describe the difference EACH has made to us – so please buy the extra gift of a light this Christmas and help a family through the toughest time they will ever face.”

The virtual sensory wall is part of the Light Up EACH Life campaign. Light Up EACH Life runs throughout December as a celebration of the life of every child and family the charity currently cares for and has cared for in the past.

Lesa Barker, Head of Fundraising – Events, Compliance and Training, said: “Buying a light on our sensory wall will make so much difference to the children and families we care for – allowing us to continue the vital services we provide at a time when families need it most.

“The families we work with tell us what a lifeline EACH is to them – that our services give them light at the darkest of times. Celebrating the families we work with at Christmas, which is such a special time of year, will make it all the more poignant.

“There are so many ways you can get involved and by supporting our campaign you will be helping EACH to continue to provide our vital care services at a time when families need it most. We’d love to hear from you and find out how you are lighting up each life so please use #LightUpEACHLife so we can share your support – thank you!”

To buy your virtual light and for information on Light Up EACH Life and how you can get involved visit www.each.org.uk/LightUpEACHLife.