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Parents Brian MacFarlane and Margaret Wilson with young Eireann, whom they care for 24 hours a day(Image: Lennox Herald)<\/p>\nLittle Eireann MacFarlane is one of just six people born with a genetic abnormality which requires 24 hour care.Parents Brian MacFarlane and Margaret Wilson with young Eireann, whom they care for 24 hours a day(Image: Lennox Herald)<\/p>\n
The family of a three-year-old girl born with a extremely rare, terminal genetic condition – which affects only five other children in the world – are issuing a desperate plea to help create a safe space for her.<\/p>\n
Little Eireann MacFarlane, from Whins of Milton, was diagnosed with a duplication of the FDXL 16 gene.<\/p>\n
The family have been searching for answers for almost all of Eireann\u2019s life, with the youngster non-verbal, blind and in need of 24-hour care and monitoring, including being fed through a tube.<\/p>\n
Eireann – who sleeps in the living room of the family home with her parents – is in in dire need of a specially adapted room to meet her complex needs.<\/p>\n
With financial options for the family limited and facing the prospect of potentially having to move away from their home and the close support of neighbours who have offered assistance, they have launched a bid to raise \u00a310,000.<\/p>\n
Mum Margaret Wilson told the Observer: \u201cEireann is very sick, she takes seizures regularly, she can\u2019t be fed orally and is currently awaiting an operation to cut the glands in her throat.<\/p>\n
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Eireann has been diagnosed with a rare genetic condition which affects her development(Image: Lennox Herald)<\/p>\n
\u201cWe had tried all of the common genetic testing to find out what the issue was, but it was only when we secured special funding that we got the advanced testing and it came back with the FDXL issue which carries a low life expectancy.<\/p>\n
\u201cWe knew there was something not right from quite young because she wasn\u2019t able to develop as quickly as other children would have.<\/p>\n
\u201cThe gene controls the whole body from speech to development; normally babies are born with two chromosomes and then they join together, but Eireann\u2019s haven\u2019t done that and it has jumbled up everything.<\/p>\n
\u201cDespite everything, she is the happiest wee girl with the most lovely personality – her smile just lights up the room and she doesn\u2019t know anything other than the life she has been given.\u201d<\/p>\n
Margaret\u2019s eldest daughter Nicole has now launched an online fundraising page, with hopes of securing Eireann the care at home she requires for the rest of her life.<\/p>\n
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Three-year-old Eireann has been left non-verbal, blind and required to be fed through a tube<\/p>\n
Margaret said: \u201cThere have been a lot of solutions we have tried, we have thought about a conservatory to the house but it would be too hot in summer and too cold in winter and Eireann can\u2019t go upstairs with a stairlift because she can\u2019t lift her head.<\/p>\n
\u201cOne of the reasons we don\u2019t want to leave the house is because of the support we get here, someone gifted me a cot which is where Eireann sleeps in the living room with Brian and I.<\/p>\n
\u201cWe are just looking for anybody who can offer us any help or advice or support in any way – we\u2019ve tried Citizens Advice and disability services, but they don\u2019t know much about this.\u201d<\/p>\n
The whole of the family including Margaret\u2019s partner and Eireann\u2019s dad Brian MacFarlane, their daughter Allanah, five, and Margaret\u2019s older children Nicole, David, Ryan, Callum have all stepped up to the plate to do their bit – as have those living near the family.<\/p>\n
READ MORE: Five weeks of repair works to begin on section of collapsed wall along A84<\/a>READ MORE: Police squash online firearm speculation as they race to early morning disturbance in Scots street<\/a><\/p>\n On the GoFundMe page, Nicole writes: \u201cIt\u2019s something no family ever prepares for \u2013 and yet here we are, doing everything we can to make her time as comfortable, safe, and full of love as possible.<\/p>\n \u201cEvery penny raised will go directly toward creating a safe, accessible space for Eireann \u2013 one where she can be cared for with dignity, love, and as much comfort as possible.<\/p>\n \u201cWe know times are tough for everyone, so please know: any donation, no matter the amount, makes a difference. Even if you\u2019re not in a position to give, sharing this page means the world to us.<\/p>\n \u201cFrom the bottom of our hearts, thank you for your love, support, and kindness.\u201d<\/p>\n