From a parent in our community
We are with you, we are walking beside you, and although we wish you weren't here with us, we are still here.
This page has not yet been reviewed by our Scientific and Medical Advisory Committee. Content is written by parent volunteers and may not reflect current medical guidelines.
Support for newly diagnosed families
You are not alone
If your child has just been diagnosed with CDKL5 Deficiency Disorder, take a breath. There is a community of Australian families who understand exactly where you are right now.
This page is a starting point. Read it when you are ready. There is no rush.
Five things you can do right now
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Breathe. This is not your fault.
A diagnosis of CDKL5 Deficiency Disorder is overwhelming. It is okay to feel scared, sad, or numb. Whatever you are feeling right now is normal.
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Ask for a referral to a paediatric neurologist
Seizure management is usually the first medical priority. If you do not already have a paediatric neurologist, ask your doctor for a referral.
Find hospitals and specialists -
Contact us for a parent buddy
Email us and we will connect you with another Australian parent who has been through this. No question is too small.
Email hello@cdkl5australia.com.au -
Learn about CDKL5 at your own pace
There is a lot of information out there. Start with our plain-language overview when you are ready.
Read about CDKL5 -
Look into early intervention and the NDIS
Early access to therapies can make a real difference. The NDIS can fund supports for your child. We have gathered the key starting points for you.
Browse resources
Talk to someone who understands
Our parent buddy program connects newly diagnosed families with an experienced Australian CDKL5 parent. No question is too small.
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If you or someone you know needs support right now
- Lifeline 13 11 14
- Carer Gateway 1800 422 737
These services are available 24 hours a day, 7 days a week.
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What to read next
Start with our plain-language CDKL5 overview for families.
Read about CDKL5 -
Helpful next steps
Practical resources and checklists to guide your next steps.
Browse resources