Supporting Terminally Ill Children

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.