In 2019, Aisha was diagnosed at birth with Lissencephaly, a rare birth defect which affects the brain, and Hydrocephalus, which is the accumulation of too much fluid in the brain and spinal cord. Just two weeks before the COVID pandemic, Aisha was discharged from hospital.
The children’s hospice at home nursing service, which The Pepper Foundation funds, has been supporting Aisha (5) and her family since she was a baby. As well as nursing care and respite support, Aisha has also benefited from regular specialised play sessions from the Play Specialists, who her mum Shazia says she “absolutely adores!”
“The bond between Aisha and the Play Specialists is truly wonderful – she loves having them around, as it gives her the chance to communicate, play, and develop independence as much as possible. For me, their visits also provide great reassurance, knowing she is in safe hands. Unfortunately, there are very few places in our area that offer suitable activities for children her age with her specific needs. Many are not accessible or safe for her, as she is still unsteady on her feet and requires space to use her walker. Because of this, we never miss an opportunity to visit Grove House in St. Albans! There, I know she will be safe, everything is designed with her needs in mind, and she can fully participate in activities while maintaining her independence. To her, Grove House feels like a second home – a place where she is welcomed, understood, and engaged with confidence.
“The bond between Aisha and the Play Specialists is truly wonderful – she loves having them around, as it gives her the chance to communicate, play, and develop independence as much as possible”
Pepper Family Days have been a fantastic way for us to go out together as a family without feeling nervous or worried. Aisha absolutely loves her visits to Whipsnade Zoo, seeing everyone there, and spending time with familiar faces. These outings also give us the opportunity to connect with other parents in similar situations, providing real insight into how families are coping. She knows exactly who she will be seeing and enjoys being around children from families she has become friends with. This has been an incredibly valuable experience for us to witness.
We had never been to Thomley, and honestly, I don’t think we would have known about it if it weren’t for Pepper organising these days! We were so happy to see how much was catered for Aisha, and we had a wonderful time. It’s definitely a place we’ll be visiting again! It was also amazing to show my two older children that there are activities their sister can enjoy independently. We just wish there were more planned days like these throughout the year. It makes outings so much easier and less stressful, especially knowing that if Aisha has a seizure, we’re surrounded by people who understand her condition and can help. That reassurance means everything to us!” Shazia, Aisha’s mum.
[Below, Aisha and her mum, Shazia.]
