As we were preparing for the conference and getting swamped down with all the tasks that must be accomplished to pull it off I was getting discouraged and ready to give up my part of Rhizo Kids...again. I was extremely tired due to Asher :) and overly emotional and missing my sweet little Ian. THEN...I met the new family who attended our conference this year from Australia with their 5 month old little girl who is effected by RCDP and remembered why it is so important to continue our work with Rhizo Kids. The family was so overwhelmed and discouraged when they arrived to the conference but they left today with a renewed energy and love in their hearts as they fell in love with our Rhizo Kids family. We ARE NOT just an organization but a "family" bonded together by a disorder that has affected each of us in one way or another.
As I sat at the conference I thought and thought about how this is what I do to show Ian I love him. There are many things you are able to do for your children on a daily basis. You are able to attend school parties, help with their school activities, give them birthday parties, etc. The grandparents are able to attend their grandchildren's tball games, high school graduations and weddings and support their grandchildren in that way. Well...there aren't many things I can do now for my little Ian. As we all know he is in Heaven so I can't run him up to tball practice or throw him a swimming party with his friends. I would give anything to be able to do things to show Ian I loved him but I can't. His grandparents aren't able to attend school functions to show Ian how much they care and they aren't able to have slumber parties anymore with their little man. BUT...we can show our love for Ian through Rhizo Kids. This is all I can do now for Ian and Ian's legacy and I will not give up the fight for our cure!!
Our family and friends did so much this weekend to show thier love for Ian. They drove the boat, let us borrow their boats, cut up fruit, cooked and cleaned, brought breakfast meals, brought drinks and snacks, brought ice, helped take care of healthy kids and Rhizo Kids, and even gave me a surprise baby shower for Asher. I could never let you know what it means that we have friends and family willing to give up their whole weekend to help us out with this conference. Your kindness does not go unnoticed and your help says to me "We love Ian...we haven't forgotten Ian...and this is how we are supporting him and his memory." Thank you for selflessly donating your time and energy to Rhizo Kids.
News from conference...there is a drug used in The Netherlands called Batylalcohol. They have used this drug for years and there is some improvements noticed in the children. It is not a cure but a treatment. We have asked the doctor who coordinates this for those families if we can join her trial and we are VERY HOPEFUL that we will start this soon for our kids. It will be costly to fund this for all the Rhizo Kids but we will work our best to raise funds for this treatment. Praying this works out and our kids are able to start the treatment.
I will post pics soon after I edit them. Going to rest now. I am simply exhausted!!!
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