Grace’s story

Grace lives in Boxted with her mum, Anwen, who is a headteacher. The thirty-year-old is the youngest of the family and has a brother, Liam, and sister, Lauren. Anwen describes Grace as ‘happy and contented and someone who rarely complains’. Although she is non-verbal, she is very animated – clapping, smiling and making noises – and is very sociable.

Grace’s birth was very difficult. Anwen explained, “Grace was oxygen-starved at birth, resulting in severe brain damage. She has hydrocephalus – which is a build-up of fluid around her brain – and cerebral palsy which affects her movement and co-ordination. She also suffers from epilepsy.

“During the first two years of her life, she was mostly in hospital. She was very small for her age and was only able to sit up when she was two.”
At the age of four, Grace started at Thomas Wolsey School in Ipswich which is a specialist school for children with medical, physical and sensory needs. She stayed there until she was nineteen. Anwen explained, “Grace had a wonderful time at school and it was great to see her communicating with other youngsters of a similar age. There was a really positive atmosphere and it felt like a big family.”

From the age of 12, Grace and the family were supported by East Anglia’s Children’s Hospices (EACH) which provided respite at weekends and help in the evenings, giving Anwen more time with her older children.

Grace’s siblings, Liam and Lauren, also took great care of her and she has inspired their future careers: Liam is now a cardiologist and Lauren has become a paediatrician.
The support from EACH finished shortly after Grace left school. Anwen was now working full-time so she had to employ carers to support Grace from 7.30am to 5.30pm and had no help in the evenings. She loved spending time with her but missed the additional support she had received from her oldest children – who were now both at university – and the time that this gave her for essential tasks.

About four years ago, when Grace was 26, a carer mentioned The J’s Hospice to Anwen who decided to contact them.

“The J’s Hospice is brilliant – an absolute life-saver. I felt confident with them straight away as the care staff are very professional. They did an assessment and listened to how I take care of Grace, then our family’s J’s Nurse set up a care plan.

“Two J’s Healthcare Assistants come to our house one weekend a month for four or five hours. They’re like aunties for Grace – she absolutely loves them! They give her a shower and do her hair for her and then they take her to the posh garden centre nearby for food or go to see the ducks in Dedham. Her face lights up when they arrive and she’s so happy that she forgets about me!

“Grace enjoys the social activities that are run by The J’s. She goes to the Inspire! social group that meets in Danbury. Recently, it had a 1970s theme with music and dancing and she had the best time ever! It’s a very positive experience for her.

“She also goes to the Monday evening ‘TJI’ group which is held at St Helena Hospice in Colchester for two to three hours. It’s like a family for her there – the other people are like older brothers and sisters to her. They play bingo and she enjoys massage and yoga. Grace doesn’t normally relax and she can get quite stiff sitting in a wheelchair, so the massage and yoga really help. I can hear her giggling when she has the massage which is lovely.”

Grace has also had six weeks of music therapy at home. “She loves the one-to-one music sessions which always seem to have a calming effect on her. She particularly enjoys someone singing to her and banging the keyboard – not always in tune! And she likes listening to the guitar and the harp.”

This additional support from The J’s Hospice has made a massive difference to Anwen as well as Grace.

“Knowing that our J’s Nurse is there so I have an extra person with expertise as back-up in an emergency makes it easier for me to cope. I’ve got someone else to talk to now and I’m not alone.

“Life can be tough, there are lots of problems and we have to fight for everything because you so often get told that you can’t have it. But the staff at The J’s are brilliant. They say ‘what can we do and how can we help?’ and then they help me get the things that Grace needs which makes such a difference.

“Grace absolutely loves them and they take an interest in the whole family. They’re upbeat, positive, sensitive, caring and very professional and they’ve even helped me to organise training for Grace’s carers – what more could I want?

“The world is a happier place because Grace is in it and The J’s Hospice makes it even better.”

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Published in 2019

Knowing that our J’s Nurse is there so I have an extra person with expertise as back-up in an emergency makes it easier for me to cope. I’ve got someone else to talk to now and I’m not alone.