Hunger in the Eyes of a Child with PWS

Hunger exists in this world. I have no idea how parents who are unable to feed their child feels. It must be gut wrenching to see your child starving and just not having anything more to give. This fact is something the world knows about... and it is our crime that this kind of hunger continues for there are resources to help those in need.

The hunger that personally hounds our family is of a different kind though...yet it is equally as heart breaking. How does it feel to let your child go hungry when there is food in the pantry? This is something I don't know yet. The time is coming that I will know though and it is what scares me about PWS the most. Some days I think Mark and I live in denial about how it will really be when "the hunger" arrives. I keep on hoping it won't come or a cure will be found before it happens with Sam. A lot of parents with PWS must have felt this way too. A lot like us dread it. And now it has arrived for a little girl named Juliette. Here's an email from Juliette's father, George, that makes it clear to me that it too will happen to my son... unless a cure is found fast. Oh God please let there be a cure...

Over the weekend, Julie (almost 6 with PWS by UPD for those newcomers) and I had a chance to play a bit. It was about 10AM. Julie had had her breakfast as always at about 6AM. Then a little snack as always at 9AM. Now it's 10 and we're playing a bit and she says "Daddy, is it lunch time yet?" I answer "No, Julie. Not for a while yet. But you just had a snack, you're not hungry again are you?" "Yes I am, Daddy" she says, then adds "Daddy, I always hungry." :>( Great. "Julie, can u use your smart brain to tell your tummy to wait a while, that it's not time to eat again yet?" "I try to, Daddy. I always try but nothing will work."

And an even more poignant one from George again...

Our teenager has a summer job as Baskin-Robbins. Most nights when she works she brings home a cup of ice cream for each family member, special as ordered for each of us. YES - I can hear you all screaming now. The only excuse I can offer is that Juliette's is always no fat or low fat frozen yogurt. She loves it, it aint half bad calorie-wise etc and she doesn't really know the difference right now between it and ice cream. So, one of the deals with her re food is she gets a small treat after lunch and one after dinner. I mean small. Typically it'll be ONE sugar-free cookie. And she is happy as a clam to get it. Well, when we have the FroYo for her, she'll have that. Whitney always takes some out of the little cup and gives it to Julie. Usually 1/3 to 1/2 of what's in the already small cup (holds about one scoop.) So it really isn't much. Julie is always happy about what she gets. Never complains or asks for more. So last night I was on treat duty. There was a new full one-scoop cup of froyo available and I gave it to Julie with a spoon and said "How much do you want to eat?" She said "Half" I said perfect. You eat half and I'll put the rest away for tomorrow. I leave her to it and come out to the computer. 10 mins later, I go in to check on her. She enthusiastically holds the cup out for me to see and there's still more than half left. I say "Great job. Go ahead and eat a few more bites and then put it in the freezer." I left it for her to do. I want SOOO much to trust her. About an hour passed. I had forgotten about it. Julie came out to lay on the sofa where I'm working. After a while she says "Daddy?" "Yes, sweetie" I answered. "Daddy that ice cream not working for me". she says in an apologetic tone. "What do you mean?" "It not working for me" she repeats. My heart starts sinking and I go to the freezer and it's not there. I find the empty cup in the trash. She ate it all. I didn't get mad at her (how CAN I?) I came back and she said "I put it in the trash" "I know Julie I saw it there. You promised me you would only eat half. WHat happened." "I tried Daddy I really tried but it not working for me." And she was sooo sad. She really felt terrible. She then said "I cant do it myself. I need help" She really said that. I told her next time I promise I will help her. So I guess I learned a lesson that Whitney and probably most of you already have learned. I learned it from the mouth of my almost 6 year old. She (and probably all folks with PWS) is aware of the compulsion to eat at some level. She does try to ward it off and fight it, even at the age of 6. But she cant do it alone. I need to help her. I need to be smarter. I need to encourage her and be there every time when she needs help. Like any of our children, only much more so. She wants SOOO much to do it herself. But sadly, she can't. And I can't trust her with food.

Now please excuse me but I must cry.