PrimordialDwarfism.com

It has been my hearts desire for many years to find other parents that may have a child like ours even before it was called primordial. Now that it is even classified more specifically I am more eager than ever to identify with families for support and advice from moms and dads that have already experienced the trials and triumphs that may be in our daughter's future.

It was recommended to put an article about Hannah and a picture in the MUMS newsletter (Moms United for Moral Support). We did this and the director called and said that she believed that she had a match for us. I can't tell you what emotions ensued! We connected by phone with the Marcello family. It was an experience that is indescribable. I felt like a sponge, absorbing all she had to say and feeling relief that finally there was someone that would understand. These phone calls led to wanting to meet with their geneticist, Dr. Scott.

Jen Marcello soon puts an article in their local paper in hopes of finding more families. See our heart cry? A kindred spirit!! This article was noticed by 20/20. They contacted the Marcello's to do a story. Meanwhile we are setting up an appointment to see Dr. Scott and hopefully to meet , in person ,the family that we had been dreaming of. We all met at the Ronald Macdonald House in Delaware. The producers of 20/20 were there to catch this moment and that is how it all started for us.

Since then we have been on several television shows in the U.S., Canada, and also in Germany. Again its our heartfelt cry to find families. It has to be in the producers heart also to believe in us and stand with us in our search and to educate with what information we have to date.

Until very recently, our numbers were extremely small, due to the rareness of this syndrome. Thanks to computer, tv, phones, and people with our same kindred spirit to help us connect we believe that this syndrome isn't as rare as we once thought. We commend Dr. Judith Hall who has written an article on this syndrome and published it in a medical journal, so that doctors around the world can now see and understand the symptoms and prognosis of this syndrome. Special thanks to Dr. Charles Scott, Dr. Richard Pauli, Dr. Christina Flora, Dr. Michael Bober and Dr. William Mackenzie for all their efforts to get us to where we are today. Thanks also to the White family for being our web managers. Christie Jordan and her daughter Brandi will be taking on some of the duties of keeping the web site up to date. Thank you !!