Losing a child

We lost our 18 month old son 29th September last year due to a rare condition he had (PIGA) and epilepsy.

He’s the only child in Spain diagnosed with PIGA, so during his short life span, he was a subject to medical research too. His medical journal gets published this year and will help with the diagnosis of PIGA for other children around Spain.

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Hello AKONI

I’m part of the Online Community team and I can see that you are new to the community - I’d like to thank you for bravely starting this thread and sharing how you are feeling. I’m so sorry to hear about your son. Most community members have sadly experienced the death of a loved one and so will understand some of what you are going through.

I’d like to share some resources that may help - these are UK based but as you’ve mentioned you are in Spain, I’d also like to mention a website that may help you find support services closer to home: https://help.befrienders.org/

Sue Ryder has some resources that may help you in your grief:

You may also want to look at the below:

  • Child Bereavement UK support families with the loss of a child. They also support bereaved children. You can call their helpline on 0800 02 888 40.

  • The Compassionate Friends support families who have lost a child of any age. You can call them on 0345 123 2304

Thank you again for sharing – please keep reaching out and know that you are not alone.

Take care,
Rhi