Baby girl who died of rare disease remembered

A baby girl who died from a rare disease aged just seven months old is being remembered with special fundraisers.

Bella Rose Moran was the first person in Northern Ireland to be diagnosed with renal-hepatic-pancreatic dysplasia and only the third in the UK.

With cysts on her kidneys, she spent her short life in hospital on dialysis.

Her parents Paul Moran and Emma McIvor described the day she was diagnosed:

"It just felt like somebody just squeezed every inch of your heart and was trailing it out of your body.

"She just looked so healthy looking at her but so sick on the inside.

"It just felt like life was being torn from us."

Bella Rose spent her short life in the Barbour ward at the Royal Hospital for Sick Children.

She was first admitted aged just five days old and never returned home.

Her parents paid tribute and described her personality:

"She was so happy, she was smiley, she loved the chats, she loved her doodie, it and her wee rabbit.

"She just loved clinging onto it and having something to hold, she loved to hold your finger and know that you were there.

"She just loved Coco Melon, loved the ipad, loved music," said Emma.

"She would have took to the fair," she added.

Just two weeks before Bella Rose's death, Paul and Emma had to make a heart-breaking choice.

They told us it was devastating:

"There was an emergency meeting...they gave us a decision, two options...it was to let her be in a side room and pass in her own time, or put her back on dialysis and she would pass away with a heart attack."

Her parents said it was a choice no one should have to make.

They are holding special fundraisers in Bella Rose's memory to help the Barbour ward where she spent her life.

Emma said she wants to repay the nurses and staff who looked after her so well:

"We're doing it for the Barbour Ward because Bella Rose had never got home.

"She was in the Barbour Ward from she was five days old until she passed.

"They were very good to her, they were actually family to her and they were all that she knew and that was the only place she knew."

To mark Bella Rose's first birthday in August a number of fundraisers are taking place.

Emma described what events are planned:

"The three peaks of the Mournes, we're doing hikes and then we're doing a family fun day and that's all to gather up funds for the Barbour Ward."

You can see a link to Bella Rose's fundraisers here.