Amadeusz and I hardly left hospital until he was nine months old. His frequent seizures are caused by a type of epilepsy called SCN8A. The condition is so rare that there are only 160 cases in the world and Amadeusz has one of the most complex cases. Without Lyn and Rainbow Trust, our lives would be very tough.
When Amadeusz was born, everyone I knew was having children too. But once he became ill, I was suddenly left with no one, my friends weren’t comfortable around me, they didn’t know what to say or do. My husband needed to keep his job, so he couldn’t be with me at the hospital and I was usually alone with Amadeusz for long days on the ward. For the first few days after he was diagnosed I found it hard to be close to him. I wasn’t sure whether I could care for him at home with his complex needs.
I heard about Rainbow Trust and met Lyn, who started taking me to hospital, sitting in appointments with me, offering support and advice. She even took me to Ikea to let off steam when I desperately needed to take some time out.
Amadeusz is completely dependent on me. He can’t sit up or hold his head up without help. Although he can’t talk, Lyn understands his needs. She has a lovely relationship with him and he enjoys her company.
Lyn’s visits bring normality to my life and I can talk to her about anything – not just about Amadeusz and his illness.
By donating to Rainbow Trust, you’ll be giving mums like me time to be there for our seriously ill children.
Anna, Amadeusz’s mum