Evenings with Genetics

One of the local hospitals has been sponsoring these "Evenings with Genetics" Seminars for the past few years. They have spoken about autism, heart defects, the genetic study into AIDS, and lots of other topics. Of course, when we heard they were speaking about "Updates in DS" we knew we had to attend. The seminar was at the Children's Museum, which was really fun since it is newly remodeled, and we had a little social hour before to talk with the speakers and the other people attending, which of course was many of the members of the DS Association.

They talked about some of the general things about DS and then some of the new research that is up and coming in the field. I didn't realize that DS has only been understood to be a genetic disorder for 50 years, which they said is relatively recent. There is some research being done concerning proteins and the way our synapses send messages. The way Randy interpreted for me was that people with DS seem to have too much "sending" protein, so the "receivers" cannot respond quickly enough. Everything is still in testing phases, so nothing will be available quickly. That's the dumbed down version as I understand it. The doctor did a very good job speaking to us, until he got to that part and my mind just went numb. I am glad we got the DVD so that I can watch that part a few more times to understand it after the 5th or 6th time.

Also, the president of the DS Association spoke for a few minutes. She talked about how she found out about her son having DS 20 years ago. The doctor came in and said the usual, "We think your son has DS." (By that time they are fairly sure...) She said, "Well, fix him." He looked at her strangely and said that he couldn't, but that there were places that could take babies like him. Her husband just about leaped over the bed to get to him and declared that he was their son, and there was no way they were leaving the hospital without him. The doctor sent the social worker in with some information for them, and the first book they read about DS had a picture of a boy on the front, behind bars in an institution. She went home and cried for 30 days. And then she pulled herself together and started raising her son. She is a fabulous mother too, and in some ways she is the mother of all of us. She has worked so hard to make life better for all of our children.

We had a good group there, and so many babies! It was probably the liveliest "Evening with Genetics" they have ever had. I am just guessing here, but I think next month's topic: "Understanding the variability in Noonan, Cardio-Facio-Cutaneous and Costello syndromes" won't get quite as big of a response!