Family Seeks £10,000 for Specially Adapted Room for Terminally Ill Girl

The family of a three-year-old girl with a rare and terminal genetic condition is urgently appealing for funds to create a specially adapted room that meets her complex care needs. Eireann MacFarlane, from Whins of Milton, has been diagnosed with a duplication of the FDXL 16 gene, a condition that affects only five other children globally.

Eireann’s family has faced significant challenges since her diagnosis. She is non-verbal, blind, and requires around-the-clock care, including feeding through a tube. Currently, Eireann sleeps in the living room of her family home with her parents, Margaret Wilson and Brian MacFarlane. The family is now seeking to raise £10,000 to modify their home to better accommodate Eireann’s needs.

Margaret shared her daughter’s condition with the local Observer, stating, “Eireann is very sick; she takes seizures regularly and is awaiting an operation to cut the glands in her throat.” She explained that despite exhaustive efforts to secure answers, it was only through special funding that they were able to access advanced genetic testing, which revealed the FDXL issue and its associated low life expectancy.

From an early age, the family noticed that Eireann was not developing at the same pace as other children. “The gene controls the whole body from speech to development,” Margaret explained. “Normally, babies have two chromosomes that join together, but Eireann’s have not done that, which has led to developmental challenges.”

Despite her health struggles, Eireann’s spirit remains bright. “She is the happiest wee girl with the most lovely personality,” said Margaret. “Her smile just lights up the room.”

In an effort to secure the necessary funds, Eireann’s eldest daughter, Nicole, has launched an online fundraising campaign. Margaret expressed her concerns about the family’s options, noting, “We have thought about adding a conservatory, but it would be too hot in summer and too cold in winter. Eireann can’t go upstairs with a stairlift because she can’t lift her head.”

The family is determined to remain in their home, where they have received immense support from their community. “Someone gifted me a cot, which is where Eireann sleeps in the living room with Brian and I,” Margaret added. “We are just looking for help or advice, but we’ve found it difficult to get assistance from citizens’ advice services or disability services.”

Family members, including Eireann’s siblings, Allanah, five, and Margaret’s older children, Nicole, David, Ryan, and Callum, are actively participating in the fundraising efforts. On the GoFundMe page, Nicole wrote, “It’s something no family ever prepares for – and yet here we are, doing everything we can to make her time as comfortable, safe, and full of love as possible.”

The campaign emphasizes that every donation, no matter the size, contributes to creating a safe and accessible environment for Eireann. Nicole further stated, “Even if you’re not in a position to give, sharing this page means the world to us. From the bottom of our hearts, thank you for your love, support, and kindness.”

Those interested in supporting Eireann’s care can access the family’s fundraiser online.