MY STORY
by Francie (aged 12 yrs)

Hello, I am Francie and I have a disability called Prader-Willi syndrome.  It’s a really sad disability for me to cope with.  If I eat sweets, junk food and fat I will put a lot of weight on and if I eat and eat and eat I will get very sick and fat as a hot air balloon and I won’t be able to move and I will die soon after that and if that happens to me I will be very sad and I love my Mum and Dad and my sisters and my cousins and uncles and aunties and grandparents and caregivers.  I will miss my caregivers when they have to leave me and I don’t like having caregivers but then I go a lot more fat one day and I said, “Mum I want to have caregivers because now I know how important it is to have a caregiver but now I like caregivers.”

In 1995 I had a caregiver called Linda.  I really did like having Linda as a caregiver because she let me walk her dogs and feed her fish every night and she gave me gifts.  Then one day her dog called Tie died of leukemia and then her dog Luke died a month later when Linda when to Australia.  He died when Linda was in Australia.

I have a horse of my own and chickens of my own and I have a saddle to ride my horse with and I go on camps with my Mum and Dad and my sisters and that’s fun and I go to conferences and I go to Opaki school and I go to manual and that is cool fun and I live in Masterton.  I get teacher aid at school.  

I go to Mini Olympics and I have won three medals at Mini Olympics and I go to Riding for Disabled and I have a pony there who I ride and I have to have a leader.

People with PWS like toys a lot.  I have lots and lots of toys and books.  I have a favourite doll called Alexia because she cries that’s why she is my favourite.  I have another doll called Charlotte and she cries as well.  She’s my favourite doll as well.  I only play with those two dolls.  I am 12 and a half years old.  I have a dog called Charley he likes to play with his toys and go walking.  He likes to chase rabbits and mice.  We have a cat, her name is Jessy and she likes to catch rabbits and mice, birds and rats.  She likes fat milk and cat biscuits and cat food.  That’s all about my cat.

When I am older I would like to live in a house with no other people except a caregiver and a dog.  I don’t want to live in a PWS flat at all, just a normal house.

When I am older I don’t want to swot exams or go to university because I know I can’t do that but instead I would like to work in a supermarket or a pet shop.  Mum and my Dad are trying a lot to get me thin and also we have locks on our fridge and cupboard.  

I have shoplifted a lot of times but I am not going to do it.  I steal a lot of food from the fridge and cupboard and school, but I haven’t done it for a while.  I am going to Salisbury school.  That’s going to be really cool.  As for me, I weigh 41 kilograms but I do try very hard not to do naughty things.  I get into major fights and I swear a lot.  My caregiver’s names are Heather, Michele, Donna, Linda, Val, Sonja, Rebecca and I am with CCS to do CCS activities.  I live on a farm and I go and stay with a caregiver over nights.

I do lots of exercises and stay at an IHC house called Humphry house.  That’s alright there when I get older I don’t be able to have children out of my tummy and sometimes people with PWS get their period.

At Salisbury it is a boarding school as well and it is in Nelson.  If I didn’t have children I will have a huge house and lots of children and I will have a dog, a cat, a pet lamb, a pet cow a pet budgie, a rabbit, mice and I will live on a farm.  I will get junk food once a week and I have 70 thousand dollars.  I would buy a lot of lollies and noodles, soup, bread, bread rolls, diary food yoghurts, cheese, milk, jelly, iceblocks, ice cream, fizzy drinks, 15 packets of any chocolate bars and 100 packets of Hubba Bubba chewing gum.

That’s all about me.

1996
 
 We would like to thank the Association for Francie story. If you would like more information about Prader-Willi Syndrome contact details are below:

Prader-Willi Syndrome Association (NZ) Inc

Postal address: PO Box 143, Masterton, New Zealand

Freephone: 0800 4PWS HELP

Web: www.pwsa-nz.co.nz

Email: pwsanz@wise.net.nz