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

The family of three-year-old Eireann MacFarlane, who suffers from a rare and terminal genetic condition, is urgently seeking financial assistance to create a safe living space for her. Diagnosed with a duplication of the FDXL 16 gene, Eireann is one of only five known cases worldwide. The condition has left her non-verbal, blind, and in need of constant care, including being fed through a tube.

Eireann lives in Whins of Milton with her parents, Margaret Wilson and Brian MacFarlane. Currently, she sleeps in the family’s living room, as they lack an appropriate room to accommodate her complex medical needs. The family has launched a fundraising campaign with a goal of raising £10,000 to facilitate the necessary adaptations to their home.

Urgent Appeal for Assistance

Margaret Wilson expressed the challenges they face in caring for Eireann, stating, “Eireann is very sick; she takes seizures regularly and cannot be fed orally.” The family had previously pursued various genetic tests, but it was only through special funding that they obtained advanced testing, confirming the rare genetic issue that significantly impacts Eireann’s life expectancy.

“I knew something was wrong from a young age because she wasn’t developing as quickly as other children,” Margaret noted. She explained that the FDXL gene is critical for bodily functions, and its malfunction has severely affected Eireann’s development. Despite her condition, Margaret describes Eireann as a joyful child whose smile brings light to their home.

To help secure the care Eireann needs, Margaret’s eldest daughter, Nicole, has initiated an online fundraising page. She hopes to use the funds to create a safe and accessible environment for her sister, allowing her to receive care at home for as long as possible.

Community Support and Fundraising Efforts

Margaret outlined their struggles in finding a suitable solution for Eireann’s care. They considered building a conservatory, but concerns about temperature and accessibility made that impractical. “Eireann can’t go upstairs, even with a stairlift, because she can’t lift her head,” she explained.

The family is determined to remain in their home, where they receive support from neighbours who have been instrumental in their journey. “Someone gifted me a cot, which is where Eireann sleeps in the living room with Brian and me,” Margaret said, highlighting the importance of community support during this challenging time.

On the fundraising page, Nicole emphasizes the emotional toll of their situation, saying, “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.” She invites anyone who can contribute, either financially or by sharing their story, to help them in their mission.

Margaret concluded with a heartfelt appeal for assistance: “We are just looking for anyone who can offer us any help, advice, or support in any way.” The family’s journey underscores the profound challenges faced by those caring for children with complex medical conditions, and their story resonates with the universal desire for love, safety, and dignity in the face of adversity.