Zachariah JHT 30/30
- By JHT
Zachariah was diagnosed with lissencephaly, a life limiting condition causing a smooth brain, in November 2017. I had heard of the James Hopkins trust through friends who had benefited from the Trust but I didn’t really know much about them. We were referred by our neuro disability nurse and quite quickly afterwards we had a home visit from a wonderful lady, Susannah, who very quickly made us feel at ease. She talked through what the Trust does and together we decided how it would benefit Zachariah and our family.
Zachariah began attending their Little Kites session shortly after Christmas. Both myself and Zachariah were suffering quite badly with separation anxiety. I was terrified of leaving him and he was always attached to me. I needn’t have worried. Everyone at Kites Corner made me realise I wasn’t being silly, it was normal to feel this way and the support we received from them was incredible. Leaving Zachariah was hard. He cried everytime I left. I was always encouraged to call if I felt at all worried about him and often they would call me to tell me he had settled well. Zachariah has 2 brothers, Oscar, 5 and Charlie, 12. Both boys love going to James Hopkins Trust to pick Zachariah up. Before Oscar started school I used to take him to stay and play sessions there. I believe the centre has encouraged both of our older boys to be more inclusive and accepting.
When Zachariah started he couldn’t even roll over let alone sit up. We believe the encouragement they gave him, and us, helped him achieve his goals. That 4 hours of respite one day a week makes a massive difference to my life. I can do things I can’t normally do, things people take for granted every day like food shopping, gardening, ironing, coffee with friends etc.
Zachariah began staying for overnight respite at the end of last year. I was so nervous but my partner encouraged me to let him go and to enjoy the rest. Now we love our overnight respite sessions. It enables us to spend time with the older boys and do things that are not suitable for Zachariah, such as visits to the cinema, rock climbing, dinner out etc. It also allows Zachariah’s dad and I to have some much needed time together. Being a special needs parent is extremely hard, it is very easy to forget the person you were before. James Hopkins trust allows us time to remember who we are and to have rest and fun.
The nursing staff at the centre are just amazing. They are all angels in disguise. I feel like they genuinely love all the children in their care and the children can feel that. We don’t leave Zachariah with many people but we trust these angels 100%. I know they will look after him as well as we do. I get quite emotional when I think about how lucky we are to be able to access such an incredible place that makes such a massive difference to so many families like ours.
We are honoured to be part of the James Hopkins family and we thank them from the bottom of our hearts.