In 2020, my wife became pregnant. During a routine scan, doctors told us our baby had a rare brain condition and was not compatible with life. We had no experience and accepted what we were told.
In January 2021, our daughter Raizel was born. Doctors said she would live only hours, maybe a day. But she survived. She experienced seizures and apnoea, could not feed without a tube, and needed medication every two hours. She spent five months in hospital.
When she was discharged, we were sent home with no meaningful care plan or support. We were frightened and unprepared. Raizel needed suctioning every half hour, feeding through a pump, constant repositioning, all while caring for our other daughter. I assumed that with such complex needs, we would automatically receive support. Instead, after a week of trying to reach our local social worker, we were offered just six hours of care a week.
We were exhausted and struggling to cope. We paid privately for night care, £120 a night, which we could not afford for long. Our mental health deteriorated. Our marriage was under strain. We felt invisible within the system.
After more than a year of fighting for her life, Raizel passed away. Losing her was devastating. It also made me realise how many carers live like this every day, giving everything, with very little support.
That is why I became involved with We Care London. I want to help ensure that carers are not left to cope alone, and that support reaches people before they reach breaking point.
David G.
