Today marks the start of Children's Hospice Week!
Over the next seven days, we’ll be showcasing our vital work with children and families, along with a few fun and exciting ways you can help us! We’d be delighted if you would like, share and get involved!
Many of the families we support face decisions on end of life care for their child. EACH provides care in the home, the hospice or at hospital. We plan all care at end of life guided by the family’s wishes, together with the other professionals involved as we are reminded that Life's Short.
Carly and Paul Hadman’s family received care during their daughter Effie’s illness and at the end of her life. Carly and Paul share their story…
“Effie started life as a healthy little girl. She loved walks in the forest, singing and dancing. She had a wicked sense of humour, yet was the kindest and most gentle girl imaginable.
“At two and a half, Effie had a drop seizure in the bath. Over the following weeks, the seizures became more frequent. She was suddenly unable to walk and struggling with her memory.
“In December 2013, Effie’s tested positive for Batten Disease, a rare neurological 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. By this point she had lost all control of her body, she was unable to sit, hold her head and was completely blind. She needed 24/7 care. Staying at EACH meant Effie was cared for, while 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. Priceless memories, showing that our little girl was still with us.
“Effie’s love of music never changed. In a world where our princess was blind, bedridden and suffering severe brain damage, moments like these became priceless." Read more on Effie's story on our website via the link in our bio!
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