DURING his all too short life Harry Palmer was a regular patient at the Royal Gwent Hospital, due to frequent seizures caused by a very rare form of childhood epilepsy.

When the two-year-old died last May, his family used a bereavement room there, described by his mum Cherylyn Gibbs as "clinical and 'cold".

South Wales Argus:

Harry Palmer

Now another bereavement room at the hospital's emergency department has been refurbished by the charity 2 Wish Upon A Star, which has supported Harry's devastated family - and it is being provided in his memory.

Born with twin sister Ruby three months prematurely in August 2015, Harry - who also has brothers Leo, six and Max four - had his first seizure aged just five-and-a-half weeks.

He was subsequently diagnosed with Dravet syndrome - which affects a tiny proportion of children with epilepsy - and a genetic mutation common to most youngsters living with it.

"He was happy, always laughing, always the centre of attention, and he loved life, but he was constantly admitted to hospital with seizures," said Ms Gibbs, from Pontypool.

"He averaged two admissions a month, and many nurses, doctors and consultants knew him. We also knew ambulance drivers, paramedics.

"This hospital has been absolutely amazing with everything with Harry. Since we lost him it almost feels like we lost another family."

Harry was often admitted to hospitals whilst on holiday too, and Ms Gibbs carried a thick file containing details of his condition. She has also had to resuscitate him "many times".

The morning of May 27 last year "was like any other", said Ms Gibbs.

"I heard him on the (baby) monitor. I went to get him up, but he didn't wake up, and our lives were turned upside down.

"I came upon this lovely charity called 2 Wish Upon A Star, and they've provided lots of support and encouragement, and lots of counselling.

"The day Harry died we were in another bereavement room (at the Royal Gwent) - very clinical, very 'cold'. just a curtain with a bed.

"Jan (Clay, bereavement officer) spent the whole day with us, and was amazing. She knew the charity was looking to do a bereavement room, and wondered if we would like to have his name put forward for it to be in memory of him.

"We were very lucky and very happy for that to happen. The room is amazing."

Ms Gibbs particularly loves a painting of butterflies adorning a wall, "because Harry loved colours, he would touch colours, because he had sensory issues, and the butterfly is also the symbol of Dravet syndrome".

Leaflets containing bereavement support and other information are also available in the room for those using it.

"The information is all there. If I could have sat in that room last year and had something like this - it displays a lot more awareness of bereaved parents and what is available for them," said Ms Gibbs.

2 Wish upon A Star aims to ensure that every emergency department in Wales has a suitable bereavement suite for families, and that immediate support is available for suddenly bereaved families.

The company Zurich is backing it with funding, and Becky Jones, immediate support officer with the charity, said the aim is to make such rooms "comfortable and safe, and not clinical".

Lisa Trounce, directorate manager for acute and emergency medicine/unscheduled care for Aneurin Bevan University Health Board, thanked Harry's family and 2 Wish Upon A Star, and added that as a result of the family's experience last year, the health board is reviewing its provision for bereaved families.