My name is Brooke and I am 17 years old and was born with Sturge Weber Syndrome.
I went to a small mainstream primary school with only a hundred children and fifteen in each year. I only received one nasty comment about my birthmark; everybody else was always nice and kind to me. I wasn’t popular, but was invited to birthday parties and friends houses for tea. Sometimes I think I was only invited because I invited them to my house first. But my memories of primary school were happy. I had a statement of special needs and received learning support, with some really nice teachers. I did all the usual clubs outside of school, such as swimming, trampolining and brownies. I liked brownies the best because I found swimming and trampolining hard. I was also a bit jealous of my sister Katie who is two years younger than me, clever and sporty. Because she quickly over took me in swimming and trampolining. At brownies there are no levels and I could just be the same. I don’t remember feeling upset at the time, but I was never picked for any school sports teams or any main parts in plays. The school also supported the SWF and did collections after the Christmas plays.
I remember sometimes being on my own at playtimes, and felt lonely.
I did try playing the recorder and keyboard at school, but I found these difficult due to my fine motor problems. I found the flute much easier and managed to pass my copper and silver medals. I even played the flute in an assembly at high school and received lots of applause.
Like most people with SW, I have to go for lots of hospital appointments. Most are ok. But I get very nervous when I have laser treatment and need to have anaesthetic. I hate the gas, and prefer the injections, but I am still really scared. I don’t like having laser treatment, because I have to stay at home for several days because I don’t like people seeing me and also my face feels very itchy. My Mum says I complain more as I get older, probably because I am more aware. I tried not to have too many appointments during school time, because I have to catch up on my work.
My move to high school was hard. I live in a small village and had to take the bus to high school, seven miles away. I only knew one girl, who also lives in my village and who was going to school with me. I found it very difficult, finding my way around, due to the fact, that I have no right peripheral vision. I got lost a lot and was very upset. It was hard finding my way around all the different classrooms, and my only friend soon dropped me when she found a whole new group. I made a few new friends, but we were in different sets, so were not together very often. I didn’t like being in subjects where we were graded, because generally I ended up with the noisy boys or the loud girls. The friends I chose are usually the bright, quiet ones, but we have little in common. I find it hard to join in conversations and often tag along.
I spent a lot of my lunchtimes on my own, and often sat in the library or walked round a lot. The teachers were concerned and often tried to get me involved in activities.
I did think people didn’t want to be with me was because of my birthmark, but I never had any horrible comments about it, at least not to my face. I have always had a lot of stares, and some people ask questions, but I always answer honestly and just say it is my birth mark. I never wore make up at school, although I do have camouflage make up and Jane showed my mum how to put it on at GOS when I was much younger, I rarely wore it, except when I left school, and I went to the Prom. I left really special and everybody said I looked lovely. I have also been a bridesmaid at my cousins wedding, and I chose not to wear make up only lip gloss.
I have always struggled at school, and found the work hard. But I enjoyed years 10 and 11 more because I liked the subjects I chose, which were media, food and nutrition and childcare, plus the usual subjects. I went to college to do childcare and made a few friends.
Having SW hasn’t stopped me having fun; I have been lucky and have been on lots of holidays. I love playing in the pool and collecting shells on the beach and walking. I am not very brave and don’t like fast rides at the theme parks. But I have tried lots of things, such as riding a camel, snorkelling, scuba diving, rock climbing, ice skating and next year we are going on a skiing holiday. Next year I would also like to do the London to Brighton bike ride with my Dad. The only problem is that I get scared riding on the road, because of my vision and prefer to go on special cycle paths or off road.
I left school this year and have started a level 2 course in childcare at North Hertfordshire College, I found myself more comfortable talking to people, this may be because, we all had the same interest in our course, and the College has a no tolerance policy on bulling, although I have never been bullied.
During the first weeks at College we had to have a vote on who was going to be Class Reps. It turned out to be Bethany and me which gave me more confidence and made me feel good. Ever since I got elected, I have been chatty to all the other girls, been speaking more in my lessons and also hanging around with them.
I wear natural makeup everyday now I am at College, and whenever I go out with friends. It doesn’t completely cover my birth mark, but I prefer using it.
I suppose I am not your typical 17 year old, I don’t go out much in the evenings at weekends but I would like to, but I am very involved in guiding and go to Rangers and I am a young leader at another guide group.
I have completed my Baden Powell award at guides and have just started working towards my Queen’s guide award.
I also like going shopping and cooking. And I enjoy trying to keep fit.
Most of the time, taking medicine doesn’t bother me, but I try to be secretive about it, when others are there and I don’t really like telling people about it. I don’t mind wearing glasses, but I don’t want to have any more squint operations. I hate having drops put in my eyes, when I go for eye checks and I didn’t like the puffer. But as I got older I am able to co-operate more. I won’t be able to drive, because I have no right peripheral vision, but this doesn’t worry me at the moment. I have told my sisters that they will have to drive me around when they are older.
I often think, what would I be like if I didn’t have SW, maybe I would be clever, or maybe not. I suppose I should be pleased, that I am one of the more able of those with SW. I think I am more sensitive than others who don’t have SW, I am afraid of loud noises and I like routine. Things have to be done in a certain order, or I get upset and I don’t like surprises.
But I am happy that I have achieved what I have and I think I will have opportunities in the future. I would like to have my own house in the future, and hopefully meet someone who I can share my life with.