We still can’t believe he has gone, he will live in our hearts forever.

One of our supporters Karen Younger got in touch after receiving our newsletter to share her experiences of coping with the loss of her beloved son Charlie.

Karen was 40 years old when her second son Charlie was born. He was born with varying complex needs including four limb Cerebral Palsy, mild Bronchiectasis, epilepsy, developmental delay, cerebral visual impairment and scoliosis. He was fed through a gastrostomy and required overnight oxygen, was unable to walk and talk but did laugh a lot and was a very happy young boy. Charlie could do nothing for himself and needed 24 hour care, which meant Karen was required to give up work to care for her son. She had help from his wonderful carers; Charlie’s dad and older brother, and the family built their lives around Charlie, who loved chatting to himself when he was comfortable in his bed at bedtime.

As Charlie’s full time carer, Karen received child benefit, carers allowance, DLA, working tax credit and child tax credit. This enabled her to support Charlie and to care for him and love him.

The family always knew that Charlie’s life was limited, but as he grew they pushed this to the back of their minds. Charlie had not been admitted to hospital for three years, and he had been so well. Previously he was in and out of hospital most months, so this was a new lease of life for Charlie and his family. In July 2016, Charlie became unwell and was admitted to his local hospital for assessment where he suffered a heart attack and was transferred to Sheffield Children’s Hospital where two days later he passed away in Karen’s arms.

Mum Karen says: “It was the worst day of our lives and we miss him so much. We still can’t believe he has gone, he will live in our hearts forever.

“There is nothing in place for parents when they lose a child and all their benefits stop. So many friends are telling me to wait before getting a job as they think it is too soon, but the truth is I can’t afford to wait. All this worry seems to take away from grieving for our beautiful son and I want everyone to seek advice if they find themselves in a similar situation.”