It’s All for Jimmy
When Jimmy was born he was diagnosed with a rare condition called Chromosome 18q deletion. The doctor who gave us the diagnosis basically told us he didn’t know what life had in store for Jimmy and that we should just take it “day by day”. Not knowing if your child will ever get married, go to college, hold a job are all worries of parents with a typical child. We were now being faced with the worries of if our child would ever even walk, or would he ever talk. Before we got involved with the Chromosome 18 Registry and Research Society our live as we knew it was very uncertain.
We had the opportunity to get involved with the Registry and our lives were forever changed. We found other families who had children like Jimmy and for the first time we finally were able to see what other children with this disorder were facing, and see how they were living with this condition. It was a huge sigh of relief to see some children were walking and talking. We finally had some sense of hope. Yes Jimmy still has a long road ahead of him, but our hope has been restored through this organization.
We have since got Jimmy involved in the research of these children, so that we can help provide as much information to newly diagnosed families as possible. Through the research we have been able to put Jimmy on some new medicines that are helping him grow stronger everyday. Without this organization we would not be where we are today. Many families across the country and across the globe would not be where they are today without the work they are doing at the Registry and Research Society.
As a parent, we have to continue everyday to do whatever we can do to help our children. Putting together this website is our way of helping to bring awareness to some very special children.