Hunger

Fantastic short article about Prader-Wil

5 Facts About The Disorder That Makes Kids Want Food 24/7

Prader-Willi syndrome is a spectrum disorder that requires more than a locked fridge

by: Lindsay Kavet

Fantastic short article about Prader-Willi Syndrome. #pws #prader_willi #praderwilli http://ow.ly/ZE6DO

What I’m learning from my son’s eating disorder

I had one hour with my anorexic son at his treatment center. Would I be able to get through to him or even find a glimmer of hope?

Sourced through Scoop.it from: www.washingtonpost.com

See on Scoop.it – A Special Life

The Air He Breathes [one family’s story of PWS]

The Air He Breathes http://ow.ly/KBbdn #pws #prader_willi #starving #confetti&confessions #Prader-willi

The Air He Breathes

March 19, 2015 by

It’s his very own.

It’s not like yours and mine.

He thinks about it. ALL the time.

Our air gives us life and breath and oxygen and growth.

…

‘Food Is a Death Sentence to These Kids’

‘Food Is a Death Sentence to These Kids’ – NYTimes.com http://ow.ly/Inrya #pws #food #prader-willi #diet #syndrome #NYTimes

By KIM TINGLEYJAN. 21, 2015

….When Rachelle was born, her limbs flopped, she couldn’t suckle or cry and her heart and lungs were weak. The diagnosis was a rare chromosomal abnormality called Prader-­Willi syndrome, which causes low muscle tone and impairs signaling between the brain and the stomach. For several years, Rachelle would show no interest in eating, doctors told Rhoda; then she would crave food intensely for the rest of her life. No matter how much Rachelle ate, she would never feel full. To make matters worse, she would also have an especially slow metabolism, predisposing her to morbid obesity. ….

 

Cyclic Vomiting Syndrome

By Cindy H.
Okay, so I have been debating whether or not to post my opinion on the ALS ice bucket challenge. Anyone on my friends list knows That *my daughter* has a non curable illness called Cyclic Vomiting Syndrome. While this is not quite as deadly as ALS, it is something that not a lot of people have heard of. I have had to watch my daughter vomit uncontrollably for hours at a time. Many times ending up in the ER due to dehydration. My child is all to familiar with hospitals and IV’s. So, what is Cyclic Vomiting you ask? It is a rare disorder that only affects 2% of people, and most of them are children. When in an episode *my daughter* vomits every 5-10 minutes for 4-8 hrs. Her longest episode was 12 hrs. which won her an ambulance ride and overnight stay in the hospital last year. The hardest thing about this is that *my daughter’s*  “triggers” are excitement, stress, and heat. So she usually ends up sick on holidays. She went to her third birthday party with a puke bucket. Just last year, she didn’t make it through Thanksgiving or Christmas without an episode. So, I challenge anyone who took the time to read this to not pour ice on your head, but simply share this status to see how much awareness we can raise for Cyclic Vomiting Syndrome (CVS) #ThePukiesSuck

— with Cyndi Ashley.

When Compassion Collides

That breaking moment. With the ugly crying.  In front of your children. I was sitting at the computer trying to complete some work tasks in order to get to Family Movie Time.  The kids were sitting…

Source: jessicapatay.com

Kat’s Story….

I want to take a few minutes and introduce myself, and explain a little about A Beautiful Hurricane. I’m 47, my husband is 53, and we have 3 wonderful kids. Needless to say – we’re tired. Each of our kids has their gifts, and each has his or her own challenges: one is 14; one is 4, and one has Prader-willi Syndrome. He’s 12. Obviously he has the most daunting challenges of any of them – although I don’t want to minimize the difficulties the other two face, either. We all love one another – maybe in different ways, and we might not always like each other, but we love deeply and strongly. That’s what families do.

As I said, each of our kids has their challenges. My 14 year old is getting ready to start high school – scary – for both of us! He gets the dubious honor of watching out for his brother with PWS and his rather precocious 4 year old sister. He’s shy, a little awkward (he’s still growing into his skin, but he’s getting there), and doesn’t know what he wants to do with this life. But who does at 14? He’s also handsome, smart and creative, and has a very strong sense of what is right and wrong – even if he has difficulty applying it sometimes. Above all, he is my first born. His smile lights up my day, and his sadness can darken it. I pin so many hopes on him that I fear he will not be able to support them, but my biggest one is that he will be happy someday, doing what he wants and loves, and will come to realize just how important and wonderful a gift his siblings are.

My 4 year old wears me out. She’s my reward for not killing off the two boys or feminizing them too much. She is a curly headed ball of energy who wants to be older so bad she would probably try to get her own apartment if I would let her. She’s hit the “why’s” and I just don’t know where she comes up with all of it. A woman in Walmart just told me “She’s getting smarter with every question.” My response was “yep, I know – God help me!” I look at her and wonder what challenges she’s going to have to face as the youngest, and as a young woman, and I pray everyday that I can teach her the strength and wisdom to succeed with grace.

My 12 year old – the inspiration for A Beautiful Hurricane – is just that. He is the storm in my life -sometimes things are quiet, sometimes a little down and dark, other times they are beautifully turbulent with the sun shining and winds blowing from many different directions. Some days are even violent – loud and full of thunder and lightening. But it’s the rainbow at the end of it that makes it all worth it. He is sensitive, loving, affectionate, so smart I can’t always anticipate his next move, and so full of hope and determination to be “like everyone else” that sometimes it just makes me cry. I wish I had his strength to go through life not always understanding what’s happening around me, at the whim of emotions that don’t make sense to me, and surrounded by food I’m not allowed to eat. He is my storm, but he is also my inspiration.

My husband is the rock upon which I lean. He is strong and, while not always a calm relationship, we compliment each other – when I am weak, he is strong; when he is faltering, I can hold steady. He is the love of my life, and I hope he knows I couldn’t do any of what I do without him.

All of these wonderful people give me something – strength, humility, love, determination, and confidence that no matter what, we can overcome the storm. As far back as I can remember, my main goal in life has been to make a difference in someone’s life. To contribute something positive to someone else’s existence. A Beautiful Hurricane is one attempt to do that. I live in a small town that has a number of special needs individuals, but doesn’t really seem to have a lot of publicity about those things. We need a place where it can all be found. I hope this will be it. I want it to have a personal touch – so weekly postings by myself, or other families/friends are in my plans. But I want it to be practical, so a who’s who in Warrensburg and surrounding areas and a section on what’s happening locally is included. I also want it to be informative, so I have already started posting articles I find online that I think might be helpful to someone.

I want my hurricane to be someone else’s safe haven. With some help from my wonderful friends, my Moms+Us partners in crime (that’s my FaceBook page) – I think maybe it can be.

So that’s me and mine. I hope to hear from you and yours in the future – God Bless, and remember, sometimes the ports in the storm are actually other rafts – they just need to tie themselves together to ride it out.