Claire Wright lives in Sutton, near Ely, with her husband Bob. In February 2012 they were told that their son, Jacob, 14 months old at the time, had mitochondrial disease. He sadly died two months later.
During Claire and Bob’s darkest days, they were supported by our hospice in Milton and, as Claire explains, they could not be more grateful.
“I didn’t realise hope was a gift until I became a mum. My little boy taught me many things and that was one of them.
“I often said the words ‘I hope for’ but until Jacob, I didn’t realise that it’s not something you wish for, it’s something that’s always there and is magnified by the love of others.
“Jacob was a beautiful 7lb 8oz baby boy and completed our family. I had dreams about life as a mother but Jacob took me down a different path, one I wouldn’t have chosen but one I’m so privileged to have been on.
“Jacob was born with a cataract and hearing loss. I always knew Jacob wasn’t an average baby (I don’t like the word normal) and as he grew I voiced my concerns about slow development, sleepiness and slow feeding to the professionals, but was told not to worry.
“At nine months he had his first seizure, which increased in frequency. At 14 months doctors indicated he had mitochondrial disease with no treatment or cure. We knew Jacob was going to die – in a matter on months, not years - and there was nothing we could do.
“We were referred to EACH in Milton. Our friends had been involved with them and knew they could help.
“We arrived at the hospice feeling scared and alone. We had so many questions. How did we arrange a funeral? Would he be left alone? They answered them all and more. On the way home we saw a rainbow. Even in this dark place there was still hope.
“On 20 April, 2012 Jacob died in my arms very peacefully with his daddy holding his hand. We drove him to the hospice where he spent 10 days until his funeral. The staff looked after us, helped us plan his funeral and say goodbye. He slept in a bed with his teddies, duvet and pillow. The staff played him nursery rhymes and talked to him every day.
“EACH cared for the whole family, especially my niece and nephew. My nephew visited Jacob in his room and said ‘It looks like he’s asleep’. He cuddled him and asked me to read them a story. Afterwards he asked ‘Is it always this lovely when someone dies?’
“We went to a memory day and the children got another opportunity to see death isn’t scary and there’s always hope that we’ll be happy and can remember Jacob with joy.
“Without Jacob and the hospice, I’m not sure our family would have the real hope we all do. I can’t imagine what it would have been like. Nobody should have to, every family should be offered the support we were.
“Jacob remains part of my life every day. He’s raised £35,000 since his death for various charities. He has given me a new focus, he has raised awareness of things like the hospice. He does the most amazing things and he changed people’s lives.”
In a message to families facing a similar tragedy, Claire said: “It doesn’t go away and it doesn’t get better. But you really will be OK. You will smile again and you will laugh again, and you’ll always be a little bit sad, but you will be OK.
“Jacob’s death is the saddest thing that has ever happened to us, and will always be, but his legacy is one of complete positivity.”