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.

Handmade Alpaca Shawl for FPWR

My dear US readers please do check out the handmade alapaca shawl being sold on eBay. Charlene, the seller, is a PWS mom who will be donating the proceeds from this sale to FPWR. If you don't need one you can get is a a gift or at least show the link to your friends. Give to charity and get something unique and beautiful in return! Just two day and a few hours left to bid....

Winnie the Pooh and PWS

I enjoy looking at the search strings that bring people to this blog. Mostly though I find that people who land here do so due to the word "bimbo". For the first time someone landed on BookishBimbo while trying to figure out something about Prader Willi Syndrome. I guess it was a kid though because he/she entered the cutest search string of all time...

DOES WINNIE THE POOH HAVE PRADER WILLI SYNROME?

I have never thought about it before but here is my answer. I do hope whoever is looking for the answer visits again so he/she will know my thoughts on this one.

Let's see. Here is picture of Pooh.

Here are some of the common things people with PWS have.

1. Hyperphagia - doesn't get full
2. Slow metabolism
3. Low energy levels
4. Short stature
5. Stubby hands and feet
6. Tendency to get obese

Comparing the two I would definitely say that Pooh DOES have Prader Willi Syndrome. After all look at Pooh eating that honey in the picture above. Look at him laze around.

He is kind of short (though Piglet is much smaller) and would benefit from growth hormone shots except that I'm not sure if there's any Bear Growth Hormone available in the market. Look at his cute little stub called feet and hands. Pooh isn't obese but they might be managing his weight gain pretty well though he can use some slimming down. And last but not the least Pooh is extremely lovable just like kids with PWS are. Look at him with his friends.

Hmmm. Maybe Pooh should be invited to PWS fundraisers! Now, I'm pretty sure I'll love Pooh even more because of this.

One Small Step to Help Kids with PWS

In support of FPWR I have decided to blog about all the upcoming fund raising events held by members. Though no events are scheduled for this month there'll be three events this August. Venues will be in Seattle, Pennsylvania, and Ontario. So if you know someone who lives there or nearby encourage them to go even if it's just to educate themselves about PWS.

August FPWR Fundraisers:

Second Annual Seattle Walkathon (August 4)
Venue:
The Landing at Bothell Park
9919 NE 180th St
Bothell, WA, 98011-1925
United States
Activities:
walk, water balloon toss, bubble machine, face and hair painting, feeding the ducks, music, games, healthy snacks, bouncy house

Philadelphia Golf Tourney (August 17)
Venue:
Juniata Golf Club
1391 E. Cayuga Street
Philadelphia, PA, 19124
United States
Activities:
Golf tournament, food, drinks, reception, skill contests, awarding of prizes

"One Small Step" Walk-a-thon (August 19)
(check out their website it's really nice)
Venue:
Centennial Park
256 Centennial Park Rd
Toronto, ON, M9C 5N3
Canada
Activities/Entertainment:

• Surprise Guest appearances including Elmo, Carlton the Bear (Toronto Maple Leafs Mascot) and friends.
• Soccer exhibition and tricks by Willy G. the Soccer Freestyler ( www.madskillsinc. com)
• Live music provided by Lost Americas Band
• Music by RPM DJ Crew
• Free airbrush tattoos
• Kid's Area including jumping castle, face painting, and children's games

No that isn't my Sam but these are kids like him that are battling with PWS.