Search the internet

You have found us on the internet so you are already researching what you know is wrong or might be wrong with your child.

The internet is a powerful tool for diagnosis and support but there is a lot of misinformation out there and some of the things you read might be frightening.

Think about having a trusted friend or family member do a quick sweep for you first. They could come up with a short list of what you might find when you look for yourself.

Perhaps have someone with you when you first look.

Remember, genetic conditions can manifest themselves differently in different children. Every one of us is unique. What holds true for one child may not affect your child.

Try to use only reliable sites and sources of information.

Follow links we have listed below.

If you don’t know your child’s condition use our database to look up symptoms. If your child has been diagnosed find their condition on the database or add it if it’s not already there so other affected families can find you. Remember each condition manifests itself differently in each child, no two are the same.

Ask the genetics department of your local hospital where they find their information.

Look at websites attached to children’s hospitals like Great Ormond Street.

Try to find official charity or research groups, clinical studies, parent-led Facebook groups, sites that are not public and that are moderated rather than open to all.

Bookmark anything you read that is informative and has a positive view because you will want to find that place again.

Personal stories are just that, personal.

It is important to know that children with the same disorder can be affected very differently.  What they and their family experience is very likely to be different from you. We all want to educate ourselves, but it can be emotional and overwhelming. Don’t feel you have to know everything immediately. Take some time away from your screen, it will still be there tomorrow.