As I checked the blog I found the last two posts did not make it. So I will try to catch you up, sorry, I was trying to keep you all up to date. We arrived back in Covina and then made final preperations to leave again to the East Coast. We arrived safely in Hartford Conn. at 1:00 am and then spent the night in a hotel that night. The next morning we drove up to Chicopee, Massachusetts and spent a few hours with my parents until we left for Plymouth, Massachusetts for the Chromosome 18 conference. Most of you know my daughter Susy has been diagnosed with a partial deletion of the 18th Chromosome. That particular Chromosome has a band that seperates the top 1/3 from the bottom 2/3rds. She has a deletion of the top so she is labeled as 18p-. Exactly how that manifests is different depending on what actual genes within the chromosome are missing. She is one of 53 children in the world that has this particular diagnosis. There are many more kids who have a partial deletion of the lower part of the 18th chromosome which is known as 18q-. In addition there are several even more rare types, of a ringed chromosome, and a third extra chromosome. So we go to the conference to see what research has taken place to teach us more about what challenges our children might face, and hear from experts about what therapy stragedies seem to work well, as well as just support one another. This year Susy became part of a young adult discussion group that met seperately from our main group. There is a group of about 15 older kids who come who are the first generation of those who have been diagnosed with a 18th Chromosome change. She also participated in a panel, which was designed to give them a chance to talk about what their experience was like growing up with this diagnosis. Since several are in college and high school, they had alot to talk about! Then the audience could ask them questions. Susy spoke in front of about 50 people with a microphone for the first time ever. She did great! Some of the younger parents with children who are just diagnosed asked the panel if they had any suggestions about what they as parents could do, Martin, a young man from Australia said, " Treat us as people first! Everyone has different abilities, those who are diagnosed and those who have no diagnosis, we are all differently abled!. What a great young man!
The conference ended on Wednesday night and so we traveled to Falmouth, Mass. to take a ride over to Martha's Vineyard to visit a friend and check up on a custom made weathervane which is being crafted by an artist for my wife's church. This artist started making custom weathervanes when the movie Jaws was being made and they needed a shark weathervane, and so that was the first of the company and since then they have been making beautiful works of art. So after we came back, we went down to Newport RI to see the old mansions that were built in the early 1900's. It was like being wisked back in time. Anyhow now we are in Providence RI preparing to go back to Chicopee and get ready for the wedding next week! Blessings to you all! Steve