Thursday, January 16, 2014

New Hope

New York Times article came out yesterday.  It was followed by an article in Forbes magazine talking further about the drug trial of beloranib in PWS.  The articles represent hope.  We pray that the research will provide insights which will lead to more answers for PWS.  I was "chatting" with a friend and she encouraged me to write this post.  There are parts that make me uncomfortable, like the idea that there is a magic formula we used with Ayden Jane that will guarantee other children the same success.  Oh how I wish it were that simple.

I have to say God is using Ayden Jane. She is the oldest of kids being fed a high fat/low carb, predominantly grain free diet from the start and supplemented aggressively like her. Their little brains are growing.  It is definitely not a cure for all things.  Speech, cognition, neurological development, anxiety are among the things PWS effects, but improvements are being noted. Many kids are even in regular preschools and are functioning typically. To know that God led us down an entirely radical path in the way we treated AJ within her first year without even knowing it was radical and preserved and grew her little brain is humbling. The joy of hearing stories of other kiddos making gains doing as great or even better is unexplainable.  I am hooked on these little ones with PWS and I haven't even met most of them.  My heart aches for all of them when they struggle and soars with joy as if they were my own when they smile.
Add to all of that the research coming out that could free Ayden Jane and her friends from the chains of living a life feeling hungry. It opens up the possibilities of going to college, living without constant supervision, being able to go to social events where food is EVERYWHERE and not feeling like a drop down alcoholic trying not to take that first sip.  (And this is an understatement of how hard it would be)

The discipline with which she must live her life is astounding and God has given her a will of steel (is there a metal stronger than steel? then that one) We meet each challenge head on.
Ayden Jane knows God. She is rock solid in her heart knowledge of Him and feels His presence always. Where else could that confidence come from anyway?

I don't know what is next for us, but I do know Ayden Jane is His to use. Her life is His to guide.  I venture to say she  is a beacon of hope to many families who live with PWS and a reflection of God to everyone who knows her.

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