A heartbroken mum has spoken of the painful moment doctors revealed her “beautiful and bubbly” baby had only one month to live.
Orla Haugh and husband Andrew welcomed daughter Ellen into the world last year.
A routine trip to the hospital when Ellen developed a cough tore their lives apart as doctors found she had a rare hereditary condition called Gaucher's Disease type 2.
Ellen, nicknamed the Queen of County Down by her parents, died aged just seven months old, Belfast Live reported.
Orla said: “Two days prior to the devastating news we were on a holiday together in Canada and felt like everything was perfect and I can't believe how drastically things changed in the space of 48 hours.
"Ellen was the most beautiful and bubbly baby girl with a fabulous and nosy personality and even when we were driving to the hospital to have her cough checked out we had been laughing all the way there.
"We were actually just about to leave when I mentioned to the doctor that she had a very hard stomach at the time and they went away and did some tests and when they returned I just knew we were about to get bad news, but I never could have imagined just how bad it was.
"We discovered she has a form of Gaucher's Disease, which is a hereditary condition that effects her nervous system, liver and other organs, and means she cannot process fats properly.
"It is an extremely rare disease and came from me and Andrew both having a gene that would give any of our children a one in four chance of developing the condition
"Sadly, while there are cures available for Type One Gaucher's, there is not for Type Two although there is research ongoing into the treatments.
"Ellen's condition went downhill quite rapidly after that and we are very thankful for all of the hard work of the doctors and nurses who helped her in her final days and made sure she did not suffer."
The family are raising money for The Gaucher's Association in order to support research into the condition with kind donors so far giving more than £4,000.
As part of their efforts to raise awareness, her husband and brother will run the Belfast Marathon, with Andrew wearing a 10Kg weighted vest in memory of his daughter.
This would have been what she roughly weighed if she was still with her parents today.
Orla added: "We just want to spread as much awareness about the condition as possible in the hopes that it can maybe help any other parents who are going through a similar situation.
"Sadly there was nothing that could have been done to save Ellen, but if we can do anything to help anyone else in the future then we will."
