Physical Health United Kingdom Project #9284

Supporting Terminally Ill Children

by Rainbow Trust Children's Charity

Project Report | Mar 12, 2018
Drop-In's time out for families

By Jenny-Anne Dexter | Project Leader

Our nine care teams across England organise regular drop-in groups for families of seriously ill children.

One group run by the Greater Manchester team takes place monthly, to provide a safe space for parents and children supported by Rainbow Trust to meet, play and share experiences.

Families can use a sensory room, to play and explore in a safe environment. It minimises the risk of catching infection from other children using the centre and is a real treat, especially for children with very limited mobility or visual impairment.

A party room is used for arts and crafts activities. It can also be used as a private area for families if they need time to talk in confidence with our Family Support Workers.

There is a soft play area - a great space for siblings to run around and explore. Many parents share their time between their sick child in the sensory area, and their sibling in the soft play area. Our Family Support Workers are on hand to engage with and support every child, ensuring they feel cared for during their visit:

“This is the first time we have been out as a whole family to something like this for over a year. Without Rainbow Trust we wouldn’t have been able to do that.” Jo (mum)

“Thank you for making this morning so good, the boys have loved it. It’s been a long time since we did something like this.” Darren (dad)

Your donations to Rainbow Trust are what makes these drop-in groups available to parents who would otherwise find it extremely difficult to take their children out for activities, unable to care for their sick child whilst giving attention to their other children.

On behalf of our families, thank you for giving them the opportunity to spend precious time together, despite their day-to-day struggles.

Permalink

Dec 13, 2017
Without Rainbow Trust life would be tough

By Anna | Amadeusz's mum

Lyn with Amadeusz

We knew there was something wrong as soon as he was born. Amadeusz was shaky and jittery and he started having seizures. After he was born we hardly left hospital for nine months; we were living by his bedside.

We were in a cubicle and the neurologist came in and told us she had a diagnosis and explained that there was no cure for Amadeusz. As she spoke to us I could literally see the door closing on me. Up until then I still had hope that his illness would pass and go away.

For the first few days after he was diagnosed I had to stand back from him – I found it hard be close with him because everything had changed. But gradually I gathered myself up again and tried to learn as much as possible about his illness so I knew how to look after him as best I could.

When Amadeusz was born, everyone I knew was having children too and they were busy with their own lives. Suddenly I was left with no one.

It was during a hospital stay two years ago that we were introduced to our Rainbow Trust Family Support Worker, Lyn. Without Rainbow Trust life would be very tough. My husband Lukasz would have to miss work when we need to visit the hospital.

At first, Lyn started taking me to hospital but now it’s much more than just driving us about. She sits in hospital appointments with me, offers support and advice and has even taken me to Ikea when I desperately needed a break.

Amadeusz’s condition means that he’s completely dependent on me for everything. As well as drug-resistant epilepsy he also has a muscle disorder – meaning he’s unable to walk, sit up, hold his head unaided, talk or feed himself but Lyn understands him.

Lyn has a lovely relationship with him – she talks to him and sings to him and he just treats her like a member of the family. I treat Lyn like a friend but sometimes she’s like a little angel. Lyn’s visits bring back some normality to my life and I can talk to her about anything – not just about Amadeusz and his illness.

By donating this Christmas, you are supporting families like mine, giving them someone to turn to during a difficult time in their lives, and giving them precious time together.

Permalink

Oct 10, 2017
Jayne Makes Every Moment Count for Emily

By Sarah | Rainbow Trust Mum

Emily and Gracie

My daughter Emily is a sixteen year old with a life-limiting brain illness. She spends much of her time in a wheelchair. She needs the supervision of a first aider, which means going out with friends independently is impossible. Having girlie chats or being able to confide in friends about her worries and fears is difficult. Jayne, Emily’s Rainbow Trust Family Support Worker, is the only person Emily can talk to.

When Jayne visits, she does arts and crafts with Emily, which takes her mind off of her illness for a short time. I can see how it lifts her mood, and the difference from when Jayne enters a room and when she leaves is amazing. During this time, I doesn’t have to worry about Emily and can get on with household chores or have some precious time for myself, which is very rare.”

Jayne also spends time with Gracie, my younger daughter. She takes her to the various sibling groups that Rainbow Trust runs nearby. The groups help her to mix with other siblings who are all struggling with similar challenges. This gives brothers and sisters like Gracie a break where she can totally relax and not have to think about Emily. She can recharge her batteries.

Jayne is a trustworthy confidant for me too. The help she provides is so much more than just help, it’s care, compassion and understanding. She’s a rock. When she calls or visits, I can take a step back and it helps steady my ship again. She’s invaluable, without her support, I just don’t know where we would be.

It’s brilliant to see Emily light up when Jayne comes around and it’s so valuable for me to have a break. It’s increased my emotional wellbeing having Jayne to talk to.

Emily wants to be a counsellor because of Jayne. She says, “I want to give back what Jayne has given to me as well. Without Jayne I don’t think I’d be able to live with myself being the way I am. I can talk to Jayne about any and everything.”

Jayne is amazing and the work that Rainbow Trust does to give this service is exceptional. Thanking Rainbow Trust and its supporters – like you - is difficult to put into words, but every day I am grateful for all the ways that Jayne makes every moment count.

Permalink

‹ 1 ... 6 7 8 9 10 11 12 13 ... 15 ›

About Project Reports

Project reports on GlobalGiving are posted directly to globalgiving.org by Project Leaders as they are completed, generally every 3-4 months. To protect the integrity of these documents, GlobalGiving does not alter them; therefore you may find some language or formatting issues.

If you donate to this project or have donated to this project, you can receive an email when this project posts a report. You can also subscribe for reports without donating.