A Co Down mum says she felt like she was "hit by a bus" when she was given the devastating news that her "bubbly and beautiful" baby daughter only had one month left to live.
Last year Orla Haugh and her husband Andrew welcomed their daughter Ellen into the world and were looking forward to the future that the young family would have together.
Sadly, a few months later their lives had been torn apart when during a trip to the hospital after Ellen developed a cough they received the heartbreaking news that their baby girl, who they lovingly called the Queen of Co Down, had a very rare hereditary condition called Gaucher's Disease type 2 and would likely pass away within a month.
Read more: Northern Ireland couple launch new business to channel grief of baby loss
Ellen passed away in September last year at just seven months old.
Orla says the news was like "being hit be a bus" as just hours earlier she had been laughing and having fun with Ellen as they made their way to the hospital.
Speaking to Belfast Live, she 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 nosey 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 that 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 down hill quite rapidly after that and we are very thankfully 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."
Orla says that she is hoping that telling her story can help raise awareness about the dangers of Gaucher's and other hereditary and metabolic diseases and says that ongoing research into gene therapy could be the solution to providing a cure for it and other conditions.
As part of their efforts to raise awareness, her husband Andrew and her brother are going to be running 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 said: "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."
The family are raising money for The Gaucher's Association in order to support research into the condition. If you would like to support their fundraiser please visit their JustGiving Page.
READ NEXT:
- Meet the man spreading mental health awareness from a Belfast roundabout
- 'You're not alone': Belfast suicide prevention group's powerful Christmas video
- Belfast mum opens up on how childhood cancer diagnosis impacts the whole family
- NI man told he'd 'never become anything' is now achieving his dreams
For all the latest news, visit the Belfast Live homepage here. To sign up to our FREE newsletters, see here.
