Letters from Johnny in Canada
Letters from Johnny in Canada
(Reprinted from "Wavelengths,"
the newsletter of the International Prader-Willi Syndrome Organization)
Date: 05/13/97
Dear Karie,
I want you to know I believe you are a very very special person indeed! I wanted you to know my name is John. I was born on May 12, 1956. I was born with Prader-Willi Syndrome too. I want you to know I dream of food. I imagine about being able to have the very same food that normal people have without
gaining so much weight, and getting so fat I nearly have a heart attack, and a never ending battle trying to lose the weight, without getting even more fat, and having no contol at all over the desire for food.
I wanted to tell you I wish I could just for once have a nice normal size seving of butter pecan pie with whip cream on top, with 2 scoops of ice cream. If I could have even just 1 scoop of ice cream on top without getting obese and almost dying I would be the happiest little boy on the face of this earth.
If I could have a large glass of homogenized milk and a plate of my mamas home peanut butter cookies, or choclate chip cookies it would be a dream come true. Boy oy boy If I could only do that I would give allmost anything.
I wanted you to know I will be speaking at People`s First Election for area representative this Saturday morning. Hi to your Mama.. I love you so very much .please send me E mail back too.
Sincerely,
Your Friend, Johnny
Date: 05/17/97
Dear Ms Kellerman,
I do live in a group home here in Whitby, Ontario.Ilive with my Mama. I think she is the greatest! I also think my buddy, Karie is the greatest too!
I receive help from the Durham Hearts Family Network that works towards individualised annualised funding that helps to get me out almost every day with the aid of my workers.
I used to liive in a Prader Willi Syndrome group home where I almost died. I was told out in British Columbia I did not qualify to receive assistance from workers so while I was living there I was cast out on the streets to fend for myself which of course I could not manage by myself! The other two clients I was told were able to be accomanied by our caregiver to their work placements. Iwas told in B.C. I could not because I was not labeled developmentaly delayed like I am considered here to be in Ontario.While I was in B.C. I ended gong to shopping malls-you guessed it-eating Laura Secord Chocolates and Ice Cream. Boy did it taste good. It was so yummy! When I was in a care home before this time for acutely brain damaged grown-ups where I weighed over 333 pounds I lost weightto 177 pounds. When I forced to fend for myself out on the streets I gained back to 318 pounds. I now weigh 297 pounds.
I just recently celebrated my birthday. I was born on May 12, 1956. I have no feelings like men do! I have feelings of a little boy about 2 years old! I do not have much male hormone.
My food is closely supervised 24 hours around the clock. My fridge has a bicycle chain around it and is locked! Send me Karies recipe for frozen yoghurt.
My food is closely supervised 24 hours around the clock. My fridge has a bicycle chain around it and is locked! Send me Karies recipe for frozen yoghurt.
Love,
oxo Johnnyoxo
06/05/97
MS TERESA KELLERMAN,
I am very glad you find my letters heart-warming, and that you really enjoy hearing from me. Also thank you very much for the letter I received from you that arrived in the mail yesterday!
What a surprise that was! Receiving a picture of my friend Karie and her best friend Sunshine relly made my day! I feel like Karie, Sunshine and I are best friends! Just like family ,huh?
The pictures of Karie and our best friend Sunshine are already so inspirational. Mama told me, "John if we could only get you looking like Sunshine..My little pumpkin would be so skinny then."
It would be a great honor for me to have my letter appear in your super wonderful newsletter. You have my exspressed permision to go right ahead and do this. Use it as many times as you wish to your liking.. If my letter can help benefit and aid the furter research of Prader- Willi Syndrome it is worth it.
I wanted to tell my best fiends Karie and Sunshine my favorite breakfast is as follows:
Johnny's Favorite Breakfast
4 ounces of apple juice(unsweetened kind of course)
1 toasted sliced bagel: equals 2 slices of bread, (absolutely no ceral including Quaker Harvest Crunch and No GRANOLA!)
1 tablespoon of honey, peanut butter, rasberry cream cheese(low fat),
low fat cream cheese, jam or just good old butter.
Taste it melting on your toasted bagel ! Yummy!
Coffee or Tea And 4 ounces of 1% milk
NO CHEATING - no extra milk - By the way mama checks up on me all the time about the fat content of the milk!
SHE DOESN'T WANT ME TO DIE! She is very strict about this!
Please send me the minutes of your Prader-Willi Syndrome Association Of Arizona. Must be a great state with you, Karie and Sunshine living there! Also get The Gathered View sent to me on a regular basis please! Thank you so much!
Yours Sincerely,
Karie"s , Sunshine"s And Your Friend,
oxoxoxo Johnny oxoxoxox
Would you like a net penpal? Then email Johnny at polkadot@globalserve.net
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