Derry mums Deirdre Cassidy and Lisa Storey have been working closely together
Lisa Storey and Deirdre Cassidy both spent countless days on Altnagelvin Hospital’s children’s ward.
Their sons had life-threatening liver conditions. Lisa donated part of her own liver to her son.
The two mothers are now working along with the Western Health and Social Care Trust to help improve services.
They have raised enough money to provide specialist glide-away beds for every parent who has to sleep on the ward.
“The longest I have stayed in for is about 46 nights in a row in Altnagelvin, over Christmas, the New Year and into January,” Lisa told BBC Radio Foyle.
She slept in a chair at her son Abel’s bedside.
Lisa Storey and her son Abel the day before their transplant surgery
“A couple of nights good quality sleep can help so much,” she added.
“I think when you go into hospital they do concentrate on the children a lot,” said Deirdre, whose son Adam had a rare genetic disease.
“They are trying to get a diagnosis, trying to support them, make sure they are safe.
“Parents need support too.
“When I went in with my son, my husband and I knew nothing about the condition – we were thrown in at the deep end.
“I felt at that stage that I would have liked to have had some parent to talk to – it would have made it easier for me.”
Both mums said that while staff at the Derry hospital “would do anything and everything for you” there are many aspects of parenting a sick child that is “not their main job”.
“Lives can change overnight,” said Lisa.
“When a parent comes into the ward they are still a parent.
“They still have to provide all the care for that child while they are in that room – it’s quite a traumatic experience.
“Parents have to make decisions and understand what hospital life is like.
Adam Cassidy with his mum Deirdre
“There is fear, the anxiety of having to go to hospital, work out other childcare, pay you bills, manage your job – these are all big factors.”
The Altnagelvin Parents Support Group is Deirdre and Lisa’s way of giving back “a wee bit of what has been given to us”.
Lisa added: “We are here, we’ve established ourselves and are offering support to every parent of any child who has complex needs, lifelong or life limiting conditions.”
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