Charity day organised in memory of Draperstown girl who lost her life to rare genetic disorder

A fundraising charity day has been organised in memory of a Draperstown baby Bella-Rose Moran who sadly lost her life last year. 

The charity day will be held at An Rath Dubh Centre in Draperstown this Sunday (August 3). All proceeds from the family fun day will be in aid of the Kidney Research Team. 

The event will be on from 12pm-5pm. You can contribute by bringing along any unwanted bric-a-brac and grab a stall for only £10 per table. 

People are also called to bring their vintage tractor or truck £10 per entry (kids can also bring their tractors and display.) 

There will be lots of fun for the family including funfair, bouncy castles, facepainting, vintage vehicles and much more. 

There will be no entry charge for the public but donations are greatly appreciated. 

Baby Bella-Rose was born with a rare genetic disorder Renal-hepatic-pancreatic dysplasia type 1, and passed  away on April 22, 2024 at just seven and a half months old. 

Renal-hepatic-pancreatic dysplasia type 1 (RHPD1) is an extremely rare genetic disorder characterized by developmental defects in the kidneys, liver, and pancreas. It's caused by mutations in the NPHP3 gene, which encodes nephrocystin, a protein involved in cilia function. This condition is often fatal in early infancy or childhood due to the severity of organ damage.

Bella-Rose was the first in Northern Ireland to be diagnosed with the disorder, the third in the UK and 19th in the whole world. 

Speaking to the County Derry Post Bella-Rose’s mum Emma McIvor bravely shared her baby’s journey to raise awareness.

“We didn’t know prior to her birth that she would be born with this condition,” Emma explained. 

“Once she was born we became aware that the levels changed within her body and she had stage four kidney failure. 

“By week three she had turned to stage five. At four weeks and one day old she started kidney dialysis. 

“At the start she was doing really well on dialysis and her feeds were starting to increase slightly. Then fluid would overtake her body and dialysis stopped working. 

“She was becoming prone to infections. Then she took sepsis in January and she was in ICU and we had to call family down to say goodbye to her. At this stage not even all the family had met her for the first time and they were already starting to say goodbye.”

Emma continued: “But she came through that. She came through the sepsis and came back out of ICU and back into the ward. As time passed, the dialysis got harder and harder for her body to  cope with. 

“Her blood pressure was dropping to the extent that she was very close to a heart attack in the ward. She took a bleed and we had to make a decision whether to put her in a room or put her back on dialysis and put her back on dialysis. 

“If we did put her back on dialysis then she was going to have a heart attack in the ward in front of strangers which we didn’t want. 

“During this time we didn’t think we would get as long with her as we did. 

“Our family got to come down every day, her brother got to spend time with her overnight. Something that we thought would never happen. 

“We got to be a family underneath one roof for a few days.  We got to take her out  for walks and out with us with family for food, take precious pictures with her down in the hospital.”

Emma reflected on the time she got with her beloved daughter as tough but easy because she got to spend time with precious child. 

“The journey in the hospital is one you would sit through if it got her out the other side and better

“No matter how tough those days were, they were easy days for me because she was there and we got to spend time with her. 

“We honestly could never thank anybody enough, especially the hospital staff, and the consultants that were with Bella-Rose. Also the different charities that did help us were amazing.  

“To be able to take off work and spend time there with her we were so grateful for. 

“Also my mum and dad, they took in our son while we spent time with Bella-Rose. Without that support family support you just would have been completely lost.”

Emma remembers Bella-Rose as a “massive smiler”. 

“She loved the craic and she loved her dodo.  She was mad about her dodo. And her wee sock over her eye, we called it her eye mask.  If you disturbed her when she was trying to sleep, you got a big side eye. That was not on. She was not having that.”

Last year Bella-Rose’s family and friends got together for a fundraiser. They managed to raise a total of £16,738 for the Barbour Ward in The Royal Victoria Hospital Belfast where Bella-Rose was cared for. 

Talking about the upcoming fundraiser Emma said: “The condition is so rare, that’s why we are helping to raise funds so they can do research. 

“So the children down the line will have a better chance with that condition. They haven't got very much information around that condition because it is that rare.

“We'll never ever be able to repay anybody for the things that they did and not that time. It’s also a way for us to be able to do a little something to give back and keep Bella-Rose’s memory alive.” 

If you would like to donate to the fundraiser for Kidney Research Team you can Email Emma directly for more information: Emmabbz4293@hotmail.co.uk