If you have just received the news that your child has Joubert Syndrome, we understand that you may be going through a range of emotions and feelings right now and perhaps for some time to come.

We recognise that it is difficult when you have just learned that your child has a rare genetic disorder to take in all the information you have received, you may feel overwhelmed and have questions to ask with perhaps no one able to answer them.

As parents of JS children we will have asked some of the same questions you are asking yourself right now, such as what does the future hold for your child?

You need not feel isolated and can take comfort in the knowledge that there are other parents out here who are willing to share their experiences with you.

Many parents of children with special needs face additional challenges to parenthood, nonetheless many parents say their children have enriched their lives in lots of ways!

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