Wednesday, December 1, 2010
Josh and I just recently found CHERUBS which is a charity that is directly for CDH Awareness, Research, and Support. Josh is so happy to find them and has been brainstorming Ideas to get the word out and do fundraisers in the West part of the US. The East part of the US does tons. Josh and I want to do a Masquerade Ball in the spring and a Snowman Making contest this winter. More Information will hopefully come on this. Josh has never been so excited about anything before. He calls me 3 times a day just to tell me his brainstorming ideas. I think it is fantastic. Not a a lot of people know what CDH is and there is much money need to find out how to prevent. CDH is what Josh and I call the most deadliest birth defect no one has herd of. It is more common then Cerebral Palsy and spinabyffida. And yet know one knows about it. it has a 50% infant mortality rate. 2500 babies are diagnosed each year. Josh and I are a very rare case. Out of the 2500 babies there is only a 2% chance of having it happen again. I haven't met anyone with 2 fatalities yet. But I have met some families who have had it twice. Most of them have had one that has passed away from CDH and one who is a Survivor. Most also have other normal children as well. Josh and I are so thrilled to have found the CHERUBS organization. There a support group for grieving parents, expectant parents, grandparents, and survivors. It is just great to know that there is other people out there that understand what you are going through and have been there too.
Anyway. We met the head of CHERUBS Dawn on line the other week. We told her that we wanted to be involved as much as we can. We are both one of the reps for Utah now. Josh got the great idea to do a Tree for the Festival of trees this year using the CHERUBS as a sponsor. We asked Dawn it that would be ok. Dawn loved the idea and gave us permission. She also told Josh that she had purchased all these cherub ornaments and didn't know what she was going to do with them. She said that she must have been inspired to get them because we needed them for the tree. Josh and I have received some great decorations for the tree. Today my mom and I went to Modern Display. We found some of my favorite things so far. A Statue and 3 Cherub ornaments. I want to keep them. So excited for decorating day on Nov. 29. Please let me know if you would like to donate to the tree.