Wednesday, July 3, 2013


Ryder and I had an amazing weekend in Baltimore while attending the IDF National Conference last weekend.  I was able to learn so much information about CVID and so much more.  It was amazing to get the opportunity to hear from the experts as well as have the chance to ask questions.  At the gala on Friday night I had a once in a lifetime experience.  IDF presented an award to Carol Ann Demaret who is David Vetter's mother.  Many of you probably have no idea who that is, but if I tell you she is the mother of the infamous "bubble boy" then it would become a familiar name.  Her son had a severe Immunodeficiency called SCID.  She has been a big part of IDF and a role model for many parents with children who have CVID such as Ryder.  She was all alone during her journey with her son David.  I am so lucky to have found an amazing support group of other parents who have children going through similar experiences as Ryder.  At this gala I was sitting at a table with a few of these parents I talk to online and Carol Ann walked past our table.  We asked her if she would take a picture with us and she was honored to.  She told us she was grateful we had such a support group and that we could use her story to help explain to people what our children are struggling with.  Although Ryder's diagnosis is no as severe as David's many people understand once I somewhat compare to the "bubble boy" story.

At the conference I learned about a fundraiser that IDF will be holding in September.  They are going to be doing their very first IDF Walk in Philadelphia on September 29.  We have signed up a team called Ryder's Stripes.  We would appreciate it if anybody could join and walk with us.  If you are not able to walk with us it would be amazing if you could donate to our team to help raise money for IDF.  You can join our team or donate at our personalized walk page.... Ryder's Stripes