Sunday, June 27, 2010

Rhizo Kids Conference



Whew...after four days with families who have children with RCDP and doctors, researchers, and dieticians discussing RCDP 24/7 I am wore out!!! The Rhizo Kids conference was this weekend at Chesnut Bay Resort in Leesburg, AL. There were nine families who attended from places such as California, Texas, Ohio, Canada, Tennesee, South Carolina, etc. There were 9 doctors from around the world...Vienna Austria, Canada, Johns Hopkins, and Kennedy Krieger, etc. It was a lot of work, but it was well worth it.



You all know I had been kicking around the idea of "quitting" Rhizo Kids. After this weekend with all the families I love and all the kids who are just like our sweet Ian I just can't give up on them. I am exhausted and yes this drains me physically, emotionally, and mentally but I just can't give up on these kids. Ian was a child with RCDP and I did start Rhizo Kids to save Ian. I realize our child has already met Jesus but I also know that RCDP and Rhizo Kids will be a part of our lives forever.

So I know the burning question is "How did the conference go?"...Well...there was one particular moment I wanted to give a doctor a piece of my mind about protocols and procedures they expect us to follow. These protocols they want us to wait on can take years, decades even, and they don't seem to remember our kids are passing away before there "protocols" are met. One child in particular...Ian. Get with it!!!

However, there was this one doctor who spoke. He creates drugs and gets them approved for diseases/disorders. AND...we love him!!! He has this drug he has been working on for Alzheimer's patients. He has been testing it on rabbits and this week he begins testing this drug on mice effected with RCDP. Apparently a person with Alzheimer's has a deficiency in plasmalogenes which is the whole problem with RCDP children. This drug PPI-1011 replinishes the plasmalogenes and the drug also has DHA attached to the drug which will help our kids all the way around. Obviously this drug will not make the kids bones grow but it would be a treatment option that would replace the plasmalogenes they are missing. This should improve brain function, eye sight, etc. To my understanding our kids would be the "test" to see if there are side effects on humans. :) There has been no effects on the animals and it contains natural occuring ingredients. The approval process and final expenses will come to a whopping $7 million to $15 million. If this gets approved for Alzheimer's patients he will let the RCDP children receive the drug for free (I think) When asked when this would be available for the Rhizo Kids the response was the end of next year. So...maybe a treatment in the next 1 1/2 years for our kids. Maybe this is our miracle!!! Pray for this doctor...His name is Paul Wood and his drug is PPI-1011. I believe in miracles and I believe in answered prayers. I know we weren't able to save Ian but think about the children who would be saved if this works.

Thanks...I can't say thank you enough. I am probably going to leave someone out but thank you Cherokee County and Tracey's crew from Sylacauga for donating so much to pull this conference off. We had plenty of drinks so thank you for donating. We had plenty of snacks so thank you for donating that as well. We had three different groups to volunteer to bring dinner each night and it was awesome...our close group of friends brought dinner Thursday night, A precious family who loves Ian more than anything brought us steaks on Friday night along with sunflowers from their "Ian garden", and our very supportive sunday school brought dinner Saturday night and even cooked in the rain. We had family and friends volunteer to babysit Rhizo Kids and healthy kids and they provided a fun time for all the kids there. My dad and Wae drove boats and Jet Skis all weekend and the kids had the time of their lives on the intertubes. Many said..."This was the best day of my life." My grandmother and mom spent the whole weekend cutting up fruit and providing lunches and snacks to all the families. They cleaned up and organized and reorganized over and over again. My brother and Kyla brought Owen and were available for all the extra errands I needed met. Wae's mom and dad and his sister and brother in law Andrea and Shane helped with dinner on Thursday night as well and they helped provide food for some meals. Tony's meats gave us pork chops at a discouted price, Subway gave us a great deal for our lunch as well as Dominoe's pizza and Chesnut Bay resort was very helpful with everything we needed. This conference could not have happened without the support of our family and friends and our awesome community.

I am tired and after a four hour nap today I am headed to bed still exhausted. I am very hopeful something positive will come from this conference if not just the support of each family to one another. It was wonderful to see all the Rhizo Kids families and it's looking like we will have another conference next year. I love you Rhizo families and I pray for the best for your precious children. I miss Ian even more today after being surrounded by so many children who remind me of his preciousness. Prayers are needed...

http://www.youtube.com/watch?v=A4ahTk8K7F4 You can view a video of the conference at this link on youtube. Enjoy...

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3 comments:

  1. I love your video. It was wonderful. Glad you have decided to keep the fight going.. and wonderful news about the drug. I will be saying prayers for this wonderful doctor. What good news! You are a champ, I can only imagine this weekend was very hard for you.. and you were still there and fighting just as hard for the babies that were there. What a wonderful testament to the person you are.
    Andrea Harrell

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  2. Virginia PetersonJune 29, 2010 at 9:36 AM

    Loved the video and getting to see all these children I've heard about. Catchy song also. I knew you wouldn't quit RhizoKids, you birthed it and it is one of your children. Just remember, this stuff takes time... but don't give up. I still pray for you and Wae and Tracy and Greg every night, and love to hear from both of you via this site and CaringBridge.

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  3. Wow, Mary!!! You are making such a difference in the lives of these families and for future Rhizo kids. I know that Ian is so proud of you for this.

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