Stories of parents and families dealing with the loss of a child.
Anne and Benjamin's story
Anne's son Benjamin was born with Down's syndrome and a heart condition. He had two successful operations on his heart when he was young and grew up to be a keen magician, bowler, swimmer, and much more. Benjamin developed epilepsy at the age of 11. When he was 18 he died after a rare reaction to his medication caused liver failure.
Anne wasn't offered any counselling or support from the medical community when Benjamin died. She also felt that people didn't see his death as the same as another child's.
Some people thought because Ben had Down's syndrome we wouldn't be grieving for him as much as if he'd been ‘normal'. It's no different at all.
Anne receives a lot of support from friends and family and the teachers at Benjamin's old school, where she and her husband Rob help out. Anne's niece now works with adults with a learning disability because she enjoyed spending time with Benjamin so much.
Pippa and Kim's story
Pippa and her daughter called Kim ‘Mr. Perfect'. He was friendly and never upset anyone, had a great sense of humour and loved music. Kim was diagnosed with global developmental delay at the age of three. He also had uncontrollable epilepsy and, aged 15, Kim died at home, cared for by Pippa and a medical team who supported her.
After Kim died, Pippa went back to university to complete studies into disability which she had started when Kim was alive. This helped her feel like she still belonged to the world Kim had introduced her to.
When you've got a disabled child you find yourself in this other world, and when your child dies, you don't belong in that world anymore. I've carved a place out for myself that says yes, I do belong.
Pippa now runs a company that supports families, and looks at how services and schools can change how they value people with a disability and support them and their families to lead ordinary lives.
Yvonne and Pamela's story
Yvonne's sister Pamela died when she was 41 years old because her medication hadn't been monitored properly. Pamela had Turner syndrome and a learning disability. She lived in her own flat and had a close relationship with her family and people in her community. A lot of Pamela's friends attended the funeral and Yvonne really appreciated them being there.
Both my children are great with people with a learning disability and that's come from having my sister around since they were babies. There just never seems to be any issues for them about equality.
Yvonne works in learning disability services and felt this was a positive outcome of her sister's life. She also saw the positive impact that Pamela had on her children.
Andrew, Hazel and Pete's story
Andrew and Hazel's son Pete had Down's syndrome and a congenital heart condition that meant his health was poor. For the last eleven months of his life Pete received good care in a hospice but he was unable to fight off an infection and died at the age of 18. Andrew and Hazel felt that even though they knew Pete was very ill they hadn't been prepared for him to die.
The end came quite unexpectedly, although clearly he was a very vulnerable young man. When we weren't expecting it, we just got a phone call in the night and he had died.
After Pete died, getting on with an everyday routine was helpful for Andrew and Hazel, and they now think positively about the people whose careers and lives have been influenced by Pete.