To the parents of a newly diagnosed child:

Your baby was just diagnosed with a chromosome 18 abnormality and you may feel like all your dreams for your child just came crashing down. However, we are here to tell you that this is not a negative life event; but rather a change in plans. We are here to catch you, inspire and support your new dreams for your child and for your family. Welcome to our chromosome 18 family.

For over 30 years we have been helping parents, grandparents, caregivers, extended family, siblings, and individuals with chromosome 18 conditions connect to the other 4,000 families in the USA and another 2,000 around the world. From this community you will find people who know exactly what you are feeling. They have already been in the place you are now. You can meet them through social media, virtual get-togethers regional events, and our Annual Family Conference. In addition, some of our families have posted their stories on this website. Most importantly, know that you are not alone.

Through our resources, you will learn the absolute latest medical and scientific information on the syndromes of chromosome 18. We have taken to heart the saying that the best way to predict the future is to invent it. We have a lot of questions we want answered and we are actively pursuing those answers. We created and support the Chromosome 18 Clinical Research Center at UT Health San Antonio, the only dedicated research center in the world for chromosome 18 conditions.

Our goal is to enable the following scenario when a family discusses the results of their new baby’s chromosome analysis. The doctor can say:

“Your child has a rare chromosome abnormality involving chromosome 18, but:

• This is a well characterized condition.
• The molecular analysis tells us that your child is not at risk for the following things associated with the condition.
• The molecular analysis also tells us that we should

• • watch for the following possible problems.
  • begin the following therapies now.
• With consistent intervention, your child can grow up to experience a full life with all of the possibilities that your other children enjoy.
• There is an active organization of families (The Chromosome 18 Registry & Research Society) who can help you make sure this happens.”

This scenario is becoming a reality because the parents who came before you are making it happen, and new members like you carry on that legacy.

I would encourage you to view and read the materials on this site about genetics and chromosome abnormalities. These resources will provide you with a better context when you read the information on your child’s syndrome. The syndrome information is intended to be comprehensive as opposed to painting a picture of any one child. With this information, you and your healthcare team can know what to monitor. Hopefully, there will be many things on the syndrome list that you can eliminate as possible problems.

When you call or email the Registry office, our staff will be happy to provide you with more information about our organization and about potential research participation.

When you have additional questions, please don’t hesitate to call or email. We look forward to meeting you and are looking forward to many exciting years together. Again, welcome to our family.

Sincerely,

Jannine D. Cody, Ph.D.
Founder