Kay Lewin

Not sure where to start, so the best thing is to start at the begining. Two weeks before I was born my mum's (Ann) water broke and she went straight to the hospital where they told her your baby is'nt due yet and your waters could not possibly have broken and sent her home. But with my mum's dates she was already two weeks over due, but with it being my mum's first baby she believed them. Two weeks later my mum went into labour and had a dry birth because she was right- her waters had broken two weeks before. When I was born the doctors rushed me away from my mum and she didn't see me for days. When she did she said she was that overwhelmed with having me, she never noticed my PWS on the right side of my face & over my eye. When she was told what it was, to be honest my mum only ever says it didn't bother her she tells me all the time I was the most beutiful baby she had ever seen, but I think we all think that about our own babies? I think she must have been very shocked and shook up by first seeing me. I know when I look at baby pictures of myself I get upset because I don't look like everyone else. My mum for years has blamed a dry birth is the reason I have my PWS. I have told her for years it can't be but she thinks that my face was pressing on a bone or something inside her that caused some sort of pressure that caused the PWS. I didn't have any treatment for my PWS when I was a baby , even though the doctors said my jaw was deformed and I have a very high palate(it reaches inside, to the top of my nose). The doctor said that at the time my palate was so thin anyone could have pushed it through with a slight touch and I wouldn't have been able to talk. The first operation I ever had was at 11 years of age. I had problems with my teeth and when they x-rayed them they found lumps that they thought were cancer but it turned out to be fibrous matter. I had 11 teeth out and the matter taken away and because my birthmark is on my gums, they couldn't stop the bleeding so I had over a hundred stitches in my mouth but it didn't stop me from eating (I love my food!). That was the start of my operations in my mouth over the years. But the sad thing was I thought I was suffering chronic tooth ache but there was nothing wrong with my teeth (I later found out!!).

The first laser treatment I had was in Leeds North Yorkshire UK. I'm not sure what the laser was called but it was huge. They used to inject the face first then do a pin head sized spot but each time they would do the laser they inject and numb the face. It was very painful and after going there and having it done about 4 times my mum realised it wasn't working so I didn't have that again. The next laser I tried was on my 16th birthday in Harragot Yorshire UK. I was put to sleep and had a large area done on my temple and that HURT afterwards but that also didn't work. It just scared instead.

Growing up I was always treated the same as everyone else in my family but at school it was a different story. I was fine up till the age of 11 and I started getting bullied. This wasn't just name calling it was being followed home very day by a gang of boys that circled around me, kicking and pushing me to the floor, spitting all over me. My coat that day had to be thrown in the bin. Not only that, at this particular school, the next day my parents had been in to sort it all out about the bullies. The teachers used to say it was all in my head and they thought I ought to go to see a counselor about my "LYING." It was terrible. No one bellived me (except my famiy) even when i got kicked down the stairs at school and had a boot mark on my forehead. They said they didn't believe me. One day I was stood at the side of the teacher waiting for him to mark my work and all the class were chanting BEETROOT FACE! Over and over again. He didn't even lift his head up from marking the work!! That day I ran to my grandma's and grandad's home and threw my uniform in the bin! I never went back to that school. My mum & dad's life then was hell. They really did everything they could to stop it. I eventually left that school and went to a fanastic school. I was told later by my mum that the head master had all the kids in the hall before I started and told them all about me and my PWS and he wanted everyone of them to be my friend and look after me! It was wonderful! The kids were so different. They had respect for other people, not like before! When I eventually left school, I went to college to study hair andmake up, and I used to baby sit for some extra money. That is where I met David, my husband. It was his nieces and nephew that I used to look after. He used to turn up to see his brother. All along he knew he had gone to see me and we've been married 17years in March. We have 3 wonderful kids- Scott, 15, Matthew, 13, and Hayley, 8.

After having endless operations on my gums and teeth, the pain in my face was getting a lot worse. It came to a head a few years ago while on holiday with David's family in Wales. My pws started weeping on the outside of my face and the pain was becoming unbearable. I went to my doctor. He didn't know what to do for me so he sent me to a different hospital to find out if anything could be done.

The doctor at this hospital asked me if I wanted him to try the new laser they had (pulse dye laser). The hospital was quite far from home so instead of going another day to try it, I had it done there and then, without thinking about it. After the treatment, the area which I had treated began to hurt much more than before!! A few weeks later, I went to see my consultant and he told me that maybe before when my face was weeping, it was some sort of release and now after the laser it had scarred the skin and it couldn't weep any more.

From then on the pain I get is so unbearable that I take mophine constantly! My doctor has doubled my morphine dosage and told me there is nothing he or anyone can do for me, except to keep upping the morphine. I had no hope!!!

That is, until I came across a lady called Linda Shannon in New York.

I decided that I just couldn't sit around and suffer any more!!

Having got her number I managed to call her one Wednesday night. After telling her about my PWS and how noone could help me, she said straight away, "Can you get to California on Friday? To our conference?" I was so shocked and very excited after the phone call. I went upstairs to David who was fast a sleep and asked him if we could get to LA on Friday (2days). You can imagine what he said!

But with a lot of thinking and a lot of help from family and friends, I got there!!

Even up to getting off the plane I wasn't sure that it was going to be real. It was such a fantastic feeling when we drove up to the hotel and it said "conference."

Meeting all of the lovely people who help run this, was so emotional for me. I leaned so much about PWS and I got to know I wasn't on my own.

I also met some brave and wonderful people there. I intend keeping in touch with everyone I met.

I went home from having seen Dr Waner and his colleagues with such hope and such a different attitude to life, my mum and friends noticed a difference as soon as I got back home. I was geting very depressed with myself.

I met Tom and Chantal from Canada, who has just had surgery on his brain. They tuned out to be new good friends. We've kept in touch!

There was lovely Jill that I met in the make up room and Tammy, Glenda, and Tiffany and Glen made us feel so welcome and we had such a good time at the beach!

I really took to Moranda and her family. She was about 10, I think, and she reminded me of myself.

Since I got back home I have had my scans done which Dr Waner asked for so he could see what he can do for me. After he has looked at them, if he can do anything, he will in Germany so my fingers are crossed.

So I would like to say to anyone who has no hope or thinks that no one can help:

Don't Give Up!!

Even if it turns out that nothing can be done, I have learned so much and gained so many new friends. Plus, the web sites help people when no one understands. Hope my story will help some one else!!!