Young child with severe brain disorder and encephalopathy -anyone else?


I am keen to know if anyone out there has a child in a condition similar to my 16 month old daughter. She had seizures from the day she was born and we now know she has a mutation which means her neurotransmitters are completely out of whack. She is unlikely to recover, in fact, she's getting worse. No drugs have controlled the seizures nor the ketogenic diet. Her responsiveness is worsening. She is becoming vegetative. It feels like she has died already to be honest. It's terribly sad, but my husband and I have stayed strong. Is there anyone out there in a similar situation? How did you cope? and how do you care for your child now?

5 Replies

  • Such a devastating situation to be in, my heart goes out to you. I do not have experience of children with neuro disorders no but I do have experience with seriously and terminally ill children.

    I would suggest you to a charity called together for short lives who support children and young people with life threatening and limiting conditions.

    Wishing you all the strength you need. X

  • Hi,

    I'm so sorry to hear about your little daughter. I agree with the previous post, but also would suggest calling the Headway helpline, just in case they can signpost you to any other organisation specific to your daughters needs. I have experience of working in a wide range of schools and hospices for children with addition needs, so I'd say you're doing the right thing; seeking the best advice right now is most important.

    Either way, this community welcomes you and is a wonderful supporting group.

    I've sent you a private message :)


  • There might be a support group for such conditions. Try phoning Headway on 0808 800 2244 (office hours & free). If anyone can direct you to an appropriate group they can.

    I'm so sorry to hear of your little one's issues ; life can be cruel sometimes, especially when it's a life not yet lived. I hope you'll find support and comfort Caroline.

    All best wishes, Cat x

  • Maybe the Child Brain Injury Trust would be of help -

  • 😞😢😔🙁 xx

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