Hello, my name is Anna Pickering. I am 16 years old and my brother, Ben Pickering was a child with Batten disease. To be more precise, he was diagnosed with Late Infantile Batten disease aged five, meaning he couldn’t walk, talk, eat nor see and this happened when I was only 3 years old and didn’t have a clear idea what was going on. Now I am older, I understand more about what my brother had and I feel it’s important to spread my knowledge and tell everyone what it was like having a brother with Batten disease.
When Ben was diagnosed, I was oblivious to the situation. I was just starting to walk and talk myself. So I had no knowledge of how to either grow up with a sibling with Batten disease or how to introduce myself into the world. I am a person who tries to view everything from several perspectives. This helped me as a child, as I never treated Ben differently to anyone else. Even though he was my big brother with Batten disease; to me, he was just my big brother, Ben.
By the time I was seven, it was clearer to see that something wasn’t right with him, and that there was pressure on each of my parents to cope with both me and my brother. My parents never restricted their love or our family experiences – we would still go on exciting holidays around the world, exploring different places and even though Ben couldn’t experience it the way I was experiencing it, I always knew he was happy to be with the people who loved him the most. I have many memories with my brother but one sticks with me every day. When Ben was about six, and I was four, we would sing ‘Row, Row, Row Your Boat’ while sitting and moving side to side in the fire gate in our lounge. We would laugh and we would smile, and it is such a beautiful memory to have, and I will cherish it all my life. My grandpa used to film Ben and me as we were growing up, and watching the videos reminds me of the love we had in our family. It really was infinite. And that’s the beauty of it.
Although we had a son/brother with Batten disease, it really did give our family a strong relationship. We called ourselves ‘Four Sides of a Square’. My friends at school, and out of school, were always so supportive of me and they never treated me any differently, which is what I wanted. I didn’t want to be seen as the girl with a disabled brother, I wanted to be seen as a normal schoolgirl. There were ups and downs coping with school work and family life and I wanted to keep them balanced so I could keep growing through my life. Overall, school life wasn’t a problem for me.
Although I loved my family so much, there were times when I felt I couldn’t take it all. I felt Ben was the priority in my family and this made me sometimes feel unwanted. Obviously I knew that my parents loved me dearly, but sometimes I felt alone and with no one to talk to. Generally I keep my thoughts to myself and I don’t share them because I don’t want sympathy or to get other people down. I felt if I told my parents they would feel upset or disappointed in themselves, and I obviously didn’t want that at all. I always found a way to get round it, and move it to one side so I could carry on growing. I couldn’t talk to my friends because I felt like they wouldn’t understand what I was going through, because my life was so different to theirs.
But this is where the BDFA helped. The charity would host events and conferences where I could talk to people about my feelings and thoughts about growing up with a sibling with Batten disease. But we didn’t only talk at “We would laugh and we would smile, and it is such a beautiful memory to have, and I will cherish it all my life. The charity would host events and conferences where I could talk to people about my feelings and thoughts about growing up with a sibling with Batten disease. There would be games, shows, music, crafts, animals, everything… and I enjoyed every moment of it.
Not only that, but I have made so many friends within the charity who I will cherish and love forever. We all help each other get through the difficult parts of growing up with our sibling, and we are always there for each other. Without these events, I feel like I would have just broken and not been able to cope with growing up overall, so I really do appreciate everything the charity does. Unfortunately, my brother passed away, aged 12, in November 2009 when I was only ten.
The morning before he passed, I remember hugging him before I went off to school and saying ‘Goodbye’. At this point, I think my parents knew he wasn’t going to make it through the day. And then, I clearly remember coming home and finding out that he had passed away and I ran into his room and I lay next to him crying because he really did change my perspective on life, and now he was gone.
However, he never went away from me because he will always be with me, in my heart and soul, forever. Six years on, my perspective on life is unique and people always ask how I have this outlook. I know it is from my brother. Ben gave me a varied view on life. He taught me that you should never restrict yourself or give up on a fight. I believe that if it wasn’t for Ben, I wouldn’t be the person I am today and
I am so happy that I had such a beautiful childhood growing up with him. I will always be so proud to be called his little sister and I hope he is proud of me and what I am achieving. Love you always, Ben.