Supporting Terminally Ill Children

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.

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.