CDKL5 Australia

Supporting a CDKL5 Family

You want to help — and that matters

If someone you care about has a child with CDKL5 Deficiency Disorder (CDD), you are probably wondering what you can do. The fact that you are here, reading this, already means a lot.

A CDD diagnosis is overwhelming. The family may be dealing with frequent seizures, hospital stays, therapy appointments, and a lot of uncertainty. Your support — even small, quiet acts — can make a real difference.

What to say

  • “I’m here for you.” Simple and honest.
  • “I don’t fully understand, but I want to learn.” Families appreciate honesty over pretending.
  • “What would be most helpful right now?” Rather than guessing, ask.
  • “Your child is beautiful.” Parents want to hear what all parents want to hear.

What not to say

  • “Everything happens for a reason.” This is not comforting to a family in crisis.
  • “Have you tried…” Unless you are a specialist, avoid suggesting treatments or diets.
  • “I know how you feel.” Unless you have lived it, you don’t — and that is okay.
  • “At least…” Anything that starts with “at least” usually minimises what the family is going through.

Practical ways to help

  • Cook a meal — or organise a meal train. Families in hospital cycles rarely have time to cook.
  • Offer specific help — “Can I pick up your other kids on Thursday?” is easier to accept than “Let me know if you need anything.”
  • Sit with them — at a hospital appointment, at home, anywhere. Sometimes company is the help.
  • Learn about CDD — read our About CDKL5 page so you can understand what the family is going through.
  • Remember their other children — siblings need attention too. Offer to take them to the park or for an ice cream.
  • Stay in touch — the diagnosis is not a one-week event. Families need support months and years later, too.

For teachers and carers

If a child with CDD is joining your classroom or care setting:

  • Ask the family what their child needs. Every child with CDD is different.
  • Learn about seizure first aid. The Epilepsy Foundation has free resources.
  • Be patient with communication differences. Many children with CDD communicate without words.
  • Include the child. Participation looks different for every child, but belonging matters for all of them.

If you want to donate

CDKL5 Australia is a community association, not a research foundation. If you would like to donate to CDD research, the Australian Foundation for CDKL5 Research (AFCR) accepts tax-deductible donations that fund research programs directly.