Feeling Hungry

3 Jan



Today is day 2 of my juice fast. Today is also Blaise’s birthday. I am not going to lie, today was really hard. I was really hungry today. Worse than yesterday. Let’s not forget to add the massive headache and acne breakout in the mix.

Today I really understand what it is like for my son.

Today I understand what it is like to have Prader-Willi Syndrome. I know what it must be like for Blaise when everybody is eating cookies and cake, and hamburgers and fries, and he can’t have any. Or if he does have any it is a teeny tiny amount, while all the other children can eat until they are full.

Today I understand what it is like when the house is filled with smells of food and you are starving, but you can’t eat.

Today I understand what it is like to sit at the table with everybody while they eat a yummy meal, but you can’t eat.

Today I understand what it feels like to have hunger pains that don’t go away, no matter what you do.

Today I understand what it is like to be so hungry that all the rest of your body parts hurt.

There were so many times today that I wanted to eat, that I wanted to give in, but didn’t. I would not let that happen. Today was the most important day of my fast. Today was Blaise’s birthday and so today I honor him by being hungry. Not just a little hungry, but really hungry.

So now I know more than ever that we have to find a cure. I want to release my son from the prison of hunger. I want to free him from pain.

When you are hungry it is all you think about. When you are hungry the hunger pain takes up so much space in your brain. Can you imagine trying to learn in school when you are starving? Can you imagine trying to have fun and play with your friends with a hunger pain gnawing at your insides? Let me tell you, it is really hard.

I know that Blaise has grown up knowing this pain, I know that this is all he knows. For me that is not much comfort. I am dedicated to finding a cure for my son. I will do whatever it takes. I will do everything for him.

If you are reading this and you haven’t eaten dinner yet, don’t. I ask you that one small thing to honor my amazing Blaise on his birthday. Just give up this one meal to know what real hunger feels like. Go to bed hungry tonight, just this once. I promise you it will give you a whole new perspective on my son’s fight.

Through it all he always, always has time for a silly face and a good laugh with mom.

To learn more about PWS please visit:




17 Responses to “Feeling Hungry”

  1. barbarapotter January 3, 2012 at 8:42 pm #

    I sure do. Love that little guy and how brave he is everyday. His smiles light up the room no matter what.

  2. denise January 3, 2012 at 9:34 pm #

    This is an amazing thing you are doing and sharing for your son. I am going to do this too, in honour of my great nephew who suffers from this consistent and horrifying hunger. Thank you.

  3. tarafly January 4, 2012 at 12:41 pm #

    Thank you, Rachel, for sharing. I send you and your family love and peace.

  4. jordanrosenfeld January 4, 2012 at 3:35 pm #

    I will absolutely do this. I’m aching for your son’s aches, and my mother heart aches for yours, too.

  5. icanseealotoflifeinyou January 4, 2012 at 8:00 pm #

    Thanks for sharing this. Your son is beautiful.

  6. Miles August January 4, 2012 at 11:50 pm #

    Do you ever think that it is wrong to exploit your son in this way. Writing obviously makes YOU feel better. But has it occurred to you that as your son gets older he may not want to be identified as a PWS poster child? Would it be better to treat him more like a normal child and not emphasize his disorder. What is HE getting out of all of this? It seems very selfish and self-indulgent for you to be putting your child out like this.

    Post this comment. I’m curious to see how other people feel about this.

    • Alison Samuel January 14, 2012 at 2:00 pm #

      I think she is educating people about PWS. I had never heard of this condition until my niece was born with it, a little over a year ago. From what I understand, it’s impossible to treat him like a “normal” (your words) child, because this is a daily, hourly struggle. It never goes away. How is this hurting him? If he gets to an age where he doesn’t like it, he’ll let his Mom know, just as any kid would! Maybe his will be the face that inspires someone to search harder for a cure. She’s not selfish, she is a Mom, fighting for her child. That’s how THIS person feels.

  7. Renay Harp Compere January 5, 2012 at 12:13 am #

    I am so proud of you. It is such a great reminder of how difficult their lives really are. Going to bed hungry tomorrow night and just might do a fast too.

    xoxo Renay

  8. barbarapotter January 6, 2012 at 12:35 pm #

    Thought I would share this blog written by Ellie’s dad (another angel with PWS) thought it fit in so well with helping to spread awareness. http://blog.innocentive.com/2012/01/05/seeker-spotlight-foundation-for-prader-willi-research/

  9. Ali January 14, 2012 at 1:54 pm #

    Miles, I’m happy that Rachel is spreading awareness about PWS and how it affects all our families. It helps us not to feel alone in our struggle. I see what you’re saying in the sense that Rachel isn’t asking Blaise permission to post about him, but anything she HAS posted about him has clearly been bathed in nothing but love!! You seem to spend an awful lot of time picking on Rachel – are you that bored?

  10. latoya January 14, 2012 at 2:08 pm #

    i’ll start off by saying cute kid…. my daughter is 4 years old and father doesn’t understand either. he feels like our daughter is okay and she will grow out it. as she gets older, she wants to eat more and more. although people say they understand i don’t think they truly do!!! i am not able to read blogs or news letters all the time because it still hurts my heart to much but my mother does, i must say it helps. sharing and hearing about other stories from mothers that are going through the same thing as i helps!!! it helps me because it confirms that i am not alone, i am not the only person going through this struggle and i am not the only person going through different emotions because of my child. it also helps my daughter, it helps emily because i am able to get different ideals about how to help her. we as a PRADER WILLIE community share different ideals and experiences, just knowing we are not alone helps. now i have a question if we were dealing with breast cancer would you feel the same way????

  11. Linda January 14, 2012 at 3:51 pm #

    Walk a day in someone else’s shoes! This is what this is! Teaching us! I volunteer at a camp for young adults with PWS. Wow! That was an awakening for me. We all ate the same number of calories. A great learning experience. For a condition that is not understood by many this is an opportunity! Thank you.

  12. Laura January 14, 2012 at 4:07 pm #

    Miles, I have a daughter with PWS and CFTD. I learn so much about these conditions from blogs and internet groups. If anything, Blaise probably feels like a star. Several teens and young adults with PWS have posted their own videos online about their lives. They all wish that everyone could understand what it’s like to have PWS. I feel like this blog helps all of us to not only understand and learn about PWS, but to treat all people with more empathy and understanding. Until I became the parent of a special needs child, I had no idea how much it would affect my daily life for the rest of my life.

  13. Ann-Marie Craig January 14, 2012 at 4:13 pm #

    Wow!! exploitation!! really??? everyone in the world needs to know about PWS just like any other condition that affects the day to day lives of our children. If my son was diabetic everyone who came into contact with him would be told and reminded constantly of the dangers of feeding him the wrong food and to watch for signs of hyperglycemia in case they should need to save his life at any given time.
    PWS is exactly the same. Putting a very real and very cute face next to the information draws attention to the blog and makes people want to read and learn and help as they can see a real child facing real problems.
    Blaise might not thank his mum when he is older but any mother of a PWS child would. Our children are not ‘normal’ and unfortunately for them and us this will always be the case. By educating others they can help us to help our children to feel and be treated as they need to be to live a happy and full life.

  14. Gina Child January 14, 2012 at 5:20 pm #


  15. Jennifer January 14, 2012 at 11:49 pm #

    I applaud you for what you are doing not only for Blaise but for every other child like my son Wyatt with PWS. Until 14 months ago I had never heard of PWS and now I live it every hour of every day. More people need to know about PWS and how it affects our children’s lives. Miles, I consider this to be anything but exploitation. Bringing awareness to people about PWS and how we live with PWS is a great thing. If you weren’t busy criticizing you would see that even you must have learned something buy reading this blog and maybe now you are a smarter person.


  1. Feeling Hungry « Manifestation Station - January 4, 2012

    […] Feeling Hungry. (Today’s is a MUST READ, folks…. This blog was written on my nephew Blaise’s 5th b… […]

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