A little at a Time
There are no set rules about talking to children about KBG Syndrome. Most young children aren't ready to know everything but do better if given smaller bits of information at a time. Giving children information gradually through time can be easier than giving one big presentation out of the blue.
You don't have to have all the answers
KBG Syndrome is a rare genetic disease, there is a lot we don't know... yet! Try to keep explanations simple and reach out to the community if you have questions. Chances are, if you don't know the answer, someone else might. The important thing is to make sure your child knows they are loved and supported no matter what. Keep the lines of communication open and make a list of questions to ask at appointments or to other parents.
Children are very observant. If they notice their parent is crying or upset they will wonder why and they may even wonder if it is their fault. Talk to your children about feelings as well and help them learn more about their emotions and how to manage them. Children with KBG Syndrome often experience strong emotions and may have difficulty communicating how they feel. Find out what works best for your child, no two children will process the diagnosis in the same way.
If there are other children in the family, don't forget about talking with them as well!
Parents often carry a heavy load of responsibility when it comes to managing a rare diagnosis. You may feel as if you need to protect your child or loved one from the weight of the knowledge you carry. Some may even put off talk about difficult issues or distressing information. Those first conversations can be very hard, be sure to have the support of friends and/or loved ones that you can talk to when you need it.
You are not alone
If you need help talking to your children- ask! You may have a medical professional in your area that is already able to help you with these difficult conversations. Child Life can be an excellent resource if they are available in your hospital or clinic. Families with KBG children are another great resource, many parents have already been where you are and will be more than happy to help guide you.