Angels in Heaven

22 May

I have convinced myself that every time somebody I love passes they become angels. I created this idea in my head at the ripe old age of 5, after the passing of my beloved father. I not only believed he was my angel but I believed that he was the brightest star in the sky at night. There have been hundreds of nights over the last almost 30 years where I have looked up at night, seen that star and thought to myself, “hi dad, I miss you and thanks for looking out for me.”

The thought sounds nice right, it is just one way I chose to learn to deal with grief. When my beloved Gunner, our first dog, was laid to rest I told my children now they had another angel in heaven looking down on them. This they understand and once again I find comfort in knowing I have a whole bunch of amazing people on my side, up there.

All that being said it brings little comfort as the news comes of another Prader Willi Syndrome child who lost their life from the syndrome. Dear sweet Lexus, who I never met, but none the less feel a connection with. Only 17 years old and a week before graduation Lexus has made her way to heaven. I know that she will be another angel looking down and protecting us, but it still doesn’t feel fair.

My heart aches for her family, she was the first thing I thought of this morning as I opened my eyes. She was the last thing I thought of last night as I closed my eyes. It is a very real wake up call to all PWS families. Not only is the thought of losing a child beyond terrifying, but our kids have PWS, it could be one of our kids next. That hits really close to home.

I had an incident this week with Blaise ingesting medication, even with the child safety lock on he managed to get the lid off and drink the bottle. My heart stopped and it hit me like a sledge hammer to the head. My child could DIE because he is so hungry he would drink medicine because it tastes good.

I don’t want to sit here and slam PWS and say how much I hate it and what it does to all those who suffer from it, that is a given. I want to say this. WE MUST FIND A CURE, A TREATMENT, A PLAN OF ACTION TO SAVE OUR KIDS. I am committed in every way that I can be to letting Blaise reach his full potential and live a long and full life. I want this for all kids and adults with PWS. They all deserve a chance.

The thought of this syndrome taking my son’s life is beyond my realm of thought. I will never give up the hope of a better future for him.

If there ever was a cause that needed your support I believe it is helping to find a cure for PWS. How can we do this? We can through research. Please consider taking the time to learn more and even consider making a small donation.

please visit

www.fpwr.org

www.pwsausa.org

I am hosting a One Small Step walk here in Georgia for my son Blaise.

Come and join us and help us find a cure.

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4 Responses to “Angels in Heaven”

  1. barbarapotter May 22, 2012 at 10:18 am #

    My heart breaks as well. We will fight for a cure and do everything we can. We help support our research to help my grandson and his friends live their best lives free of hunger and free of pain

  2. jennifer k. May 22, 2012 at 12:06 pm #

    Thanks for posting this, Rachel. Nolan and I spent some time in the company of Lexus last summer. I was stunned to hear if her passing. Whenever we saw her she was quiet and sweet and had a beautiful smile. Our hearts go out to her family. Praying for more effective treatments for our kids.

  3. jamesvincentknowles May 22, 2012 at 12:07 pm #

    wow. my heart had to grow just to finish reading this.

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