Posted on 22.11.2018
Taye was seven months old when he was diagnosed with a rare condition, generalised bilateral cerebral polymicrogyria, which causes epilepsy, vision and development problems, as well as stiffness in his muscles.
Taye’s Mum, Chealse, had spent the first few months of his life going back and forth to A&E before the diagnosis was confirmed and soon after then, the family were put in touch with Acorns. “I had heard of Acorns before, but I had no idea what they did. To be honest, once the nurse told me, I didn’t feel comfortable about taking my baby to a hospice. But when I got there, it was nothing like I thought. I remember the instant feeling of a home from home, and the warmth there.”
Chealse was nervous about allowing other people to look after Taye, but she was soon reassured. “The idea of someone else looking after your child is very daunting, but the support Acorns gives and the knowledge they have is incredible. I trust them completely with Taye.”
Whilst at Acorns, Taye enjoys painting and visiting the sensory room and receives physio to help with his stiff muscles. The family also receive outreach support from nurses who will visit to give Chealse some respite. “The nurse will read to him, play and do arts and crafts. Even just hanging out and giving him a cuddle… he loves cuddles! In this time I can do all the little things that I usually don’t have time for – like food shopping, going to the doctors, or even seeing a friend for a coffee.”
“I can’t express all the ways they have helped and continue to help me. They’ve been there since day one, they are an extension of my family and I can’t thank them enough for everything they do for me and for Taye.”