Saturday, May 10, 2014

A Rhizo Kids Mother's Day

When Ian was born there wasn't much information available about Rhizomelic Chondrodysplasia Punctata. There wasn't many known families with RCDP and it was hard to find any other parents with children with this condition. It was a hard, lonely, and isolating time in our lives. Then God stepped in and showed me that Ian wasn't a "mistake" but a God ordained circumstance where he would bring me one of dearest friends in the world with Tracey Thomas. It was by no accident that our boys were born at the same hospital five weeks apart. It was no accident that the doctors and nurses who had cared for Ian were now caring for Jackson. God did that! He sent me a friend, a sister, and a partner in crime! Tracey and I decided we would start a non profit organization a couple of months after the boys were born. We knew three other families with children like ours and we all worked together to get this started. We started with a $150 donation from my uncle which paid for us to start the Rhizo Kids website. Through that website we have met well over 70 families have been affected by RCDP. Because of that first donation that got us off the ground we have doctors who come annually to our Rhizo Kids conference to meet our children. We have doctors who are doing research on treatments for our kids and we have doctors creating Natural History studies on children with RCDP. We are able to bring many families to Chesnut Bay Resort once a year to be welcomed into an environment where their family is "normal" for a few days. Here they meet with doctors and learn how to take care of their child's serious medical needs. I want to cry every year I see the new families come in...they are so scared. But by the end of our conference they are happy and laughing and it makes my heart smile BIG! You see this all started from one small donation that led to something big. Every donation we get counts...every $1, $5, $20, or every shirt bought. Rhizo Kids requires an annual budget of about $90,000 now. We are only bringing in about $60,000. We aren't going to be able to continue on this path for long. When my sweet Ian died a large part of me died. I wasn't able to continue doing the things I had done for Rhizo Kids. My heart was shattered and I was doing good to put one foot in front of the other. I dropped everything in Tracey Thomas' lap and I ran! I did the minimal to get by for Rhizo Kids and I tried to let my heart heal. The truth is I'm a mom who has buried her child and there is no cure for that pain. Running from Rhizo Kids wasn't the answer...Tracey has went above and beyond for Rhizo Kids and has made it an awesome organization. She applies for grants and has a lot of support from Honda. She has continued all of this work even after losing her precious Jackson. She is a hero to me!!! So this year for Mother's Day instead of just looking at Tracey and myself and thinking"Man I feel sorry for them! They have to endure this day without one of their children!" Will you do something for us that will make us smile on Mother's Day? You can buy a new Rhizo Kids shirt or send a donation to Rhizo Kids in our child's honor. We can't hug our boys anymore and we can't whisper "I love you" into their ears. But we can continue our work for Rhizo Kids in their memory and still be their MOMS! It will crush the Rhizo Kids organization if we aren't able to meet the monetary obligations that Rhizo Kids has now. This is all we can do for our boys in this life now that they are gone and we need your help. My uncle never knew what his $150 donation would do for Rhizo Kids...he never dreamed it would be this big. Maybe your donation or shirt order or help at our conference will be the next driving force for Rhizo Kids. Tracey and I will wake up on Mother's day this year and we will survive the day just like last year. It won't be a day all full of smiles...inside our hearts there will always be the missing piece but we will be able to make it through the day knowing that we are still doing something for our boys by keeping their memory alive through Rhizo Kids. This is our new shirt design we are selling. You can buy one for $15. They are gray and we can get them in infant sizes up through XXX. You can email me at for a shirt or you can contact me on FB to order one. If you would like to mail us a donation please email me and I will get you our mailing address. Thank you for your continued support!
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