13/20 December Blog Challenge: My Fears.

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My fears…

I have many fears. Throughout my life I have been afraid of many things, this or that, it doesn’t really matter anymore.  I have learned that when you become a mother/parent, that those fears you had all start to seem pretty trivial.  Now my fears all seem to revolve around my daughter.

If you are a follower of my blog, you probably already know about my daughter and her genetic disorder. For those of you that are new, My daughter has a rare genetic condition called Prader Willi Syndrome. One of the most dangerous symptoms of her condition centers around eating. Her body doesn’t metabolize food like her typical peers, in fact her body can only handle about 60% of the calories that her peers can. With the slow metabolism there is ( and thankfully this hasn’t kicked in yet for our daughter) also an insatiable hunger that is a main trademark of PWS.  Imagine never feeling full, no matter how much you eat.

The hunger of PWS is the root of many of my fears. I fear that my daughter will never feel full after eating. I fear that this hunger will control her life and she will not be happy. I fear that a remedy will never be found to help her. I fear that the hunger will drive her to be someone that she is not. And I fear, more than anything, that someday… for just one moment my attention won’t be on her, and she will gain unsupervised access to food and in that time she will eat herself to death.

These are horrible things to be afraid of. These are things that no one should have to fear. Food, it is such a complicated topic with PWS…. We need food to live… it’s what sustains us.. gives us life… but for my daughter is the one thing that is also so very dangerous.

I also fear that people will not understand my daughter and the seriousness of her condition. This is why I started my other blog ( Fight the HUNGER) which also has a facebook page. It is my mission to spread awareness for PWS, help fund-raise for research that will hopefully help with the symptoms of PWS and to do anything I can to help my daughter live the best possible life she can while managing her syndrome.

76_French-Emelyn-00052I fear that I will never be able to give her the amazing life she deserves… But I will never stop trying.

whoa these blog posts just got real…

Mira

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