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There are approximately 49,000 children and young people diagnosed with life-limiting conditions Every year in the uk . Little sparks works with children and young people in Enfield who have complex medical conditions, or who are deemed as having A short life expectancy. We aim to provide access to a range of activities that are often limited to them due to their needs. Siblings of these children can also be isolated. Little sparks offers a safe place for children and young people to talk, feel included and express themselves though play and craft activities.
Here is just one of the family's that little sparks has supported.
Our daughter had a drop attack when she was four-and-a-half, and that was our first sign that anything was wrong. The following day she was at school and the teachers rang us up to tell us she’d fallen over three times.
Karen and husband Paul were unaware that there was anything wrong their daughter Zoe until 2010 when she began having drop attacks.
“We took her to A&E, she had a number of tests, and they confirmed she had a form of epilepsy but they thought it could be something neurological.
“Almost a year later, after numerous tests, she was diagnosed with Late Infantile Batten disease – which is terminal”, the couple explained.
The condition is an inherited disorder of the nervous system. It typically begins in childhood and may result in seizures, visual impairment, behaviour changes and eventually a loss of motor skills and the ability to walk, talk and communicate.
The family were referred to BEH’s Play and Bereavement Team and Lisa Dodd, our Play Specialist and Bereavement Co-ordinator, worked closely with Karen, Paul, Zoe and their son Jamie.
The team visited the family in their home fortnightly and provided support with practical issues as well as working on the relationship between the siblings.
Lisa explained: “I wanted to encourage Jamie and Zoe to play together. When you have a child who was well and then begins to deteriorate the situation can also be intense for the sibling. Trying to get them to play is one of the most normal things you can do.
“We would play with wooden dominoes and she would choose which ones she wanted to lay down and Jamie would put down the ones he wanted to use himself. Zoe would really laugh when we won, she’d find it amusing that she beat her brother, which would be normal sibling rivalry. And, as she deteriorated we would do a lot more sensory play, and we would encourage Jamie to do the same.
“These moments were really important, it meant they were still able to bond, and maintain a sense of normality - maintain a brother-sister relationship, when a lot of other things were changing at once.”
Karen and Paul appreciated the support provided.
“It was supportive having Lisa around. Seeing the kids playing stimulates you to do your own thing”, Paul explained. “We had different healthcare professionals in and out the house regularly, but having Lisa around was consistent. It meant we were able to build up a relationship with the team and if we wanted to have a chat or ask any questions we could.”
Karen added: “If I had any questions I would mention something to Lisa, or one of the team nurses Natasha or Vicki. They would usually come up with brilliant ideas about how to deal with it and if one person didn’t know the answer, they would ask their colleague to contact us. These little things made a big difference.”
Zoe’s condition deteriorated rapidly and the family had to make many adaptations not only to their routine and lifestyle, but also to their environment. Not long after diagnosis she was in a wheelchair and required the use of a hospital bed.
“One year you have two able-bodies children and the next year you’re making adaptions to the house to accommodate a wheelchair, you have to think about a number of things, like a through-the-floor lift. It’s a lot to take in at once.” Paul explained, “And, when you have done six days of 24 hours, it’s really nice having someone come in and play with the kids. It means you get to sit down.”
The team also work closely to commission agencies so the parents are able to get some respite.
“It took me about two months of asking ‘Have you thought about us coming in and doing our own referral to the commissioners to get some agency cover?’ before they said yes. It was the minimum amount they could possibly live with they had from us”, Lisa explained.
“We couldn’t let go, it was our daughter. Even for the two hours, it was difficult being away from her, but we knew we needed to make time to take Jamie out and go out as a family unit to try and carry on with normality”, Paul explained.
“This gave Jamie two hours of unfocussed attention, and it meant Zoe wasn’t dictating how our time needed to be spent. He would become the centre of attention”, Karen added.
When the day came Zoe passed away in the comfort of her own home and her parents took her to Haven House, a children's hospice.
“We were able to take our daughter from our home to another room of rest. That was so important to us, it was so horrible in some respects but we wanted to do it ourselves. We had the afternoon with the three of us being able to reflect on the day’s events.”
Jamie was nine at the time, and although he had done the journey with his parents who were honest and open with him, the gravity of the situation is often realised gradually.
Lisa’s role changed from Play Specialist to Bereavement Co-ordinator and she had regular sessions with Jamie to help him deal with his grief.
“We talked about Jamie’s journey over the last four- five years and linked in with Zoe’s. We discussed how things have changed within the home environment. At this time he went from having six professionals coming in and out the home to none. And from not being the focus of attention to the only child in the family.
“In addition, his parents were grieving, his grandparents were grieving. Most children in that situation don’t want to upset someone.
“At the beginning Jamie was very resistant. He was very much ‘I am not going to cry, this is me, and I’m not going to talk to you about it’. Knowing his parents, I was able to say ‘at some point he is going to have talk to me and at some point he is going to cry’ and they recognised that he needed that.”
Karen explained: “He wasn’t going to open up to us because he’s frightened of upsetting us. Having someone like Lisa around was helpful. It’s about closure and getting him to talk, reflect and crying is part of the process.”
“The sessions allowed Jamie to say how he was feeling both good and bad and this allowed him to expressed himself in a manageable way, instead of turning the bad feelings inwards.”
Jamie, who is now 12, is a very confident young man. He comes to the sibling afternoons during the school holidays, where he is able to have a chat with Lisa or another person in the team, if he wants.
And, Karen and Paul attend the quarterly parent group which Lisa runs.
“There are other people who are in the same boat, who understand what is going on. You’re in very similar circumstances and you’re not being judged. It’s a chance to talk about things.
“Each individual is unique and deal with grief in different ways. You have to pick yourself up and get on with life but that’s not to say we forget. As a family, we go and visit Zoe once a week at the cemetery and have a chat with her and off we go again”, Karen added.
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Jun 28, 2018
Jun 26, 2018
Amazing work that you do, good luck. XxX
Jun 25, 2018
What fantastic work you do ! Good luck with raising the money x
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