Donegal mum shares daughter’s journey from Crumlin to her first day of school
“I am mum to a fabulous little lady, Lucy, who is now six and a half. That half is very important in our home. She is spirited, determined, feisty and so funny. She has a zest for living that can only be admired. Lucy also has a genetic skin condition that is very severe and requires life-long care. It is called Harlequin Ichthyosis. There is no cure.
For our family, change began with an exciting car journey into Letterkenny hospital, and it took us to the Newborn Intensive Care Unit (NICU) in CHI at Crumlin. For the next eight months Crumlin was our home while our little girl was cared for there. This is why it’s so hard to believe that just over one year ago, Lucy walked into her new classroom in Scoil Roisín, Donegal, alongside her peers to start a new journey. The tears that fell on that ordinary sunny Wednesday fell because of the pride, gratitude and contentment we felt. We embraced and celebrated the extraordinary of both the big and small changes in this life.
Most students are blissfully unaware of all the background preparation and hard work done by the school staff, the many professionals and volunteers in our community to make it possible for Lucy to attend her local primary school. Our family experienced invaluable and tremendous support from our community and we are eternally grateful. No one in Scoil Roisín had ever dealt with Ichthyosis before, but the staff were more than willing to learn with us so that Lucy would be in the best environment and receive any special care she needs. Scoil Roisín now boasts new flooring and paintwork throughout, wheelchair accessible doors, a disabled toilet, a separate room for carrying out care needs (creaming, bandaging, PEG feeding) a shaded soft play area and new wipe
able furniture and equipment.
As a parent of a child who tends to attract a lot of attention due to her unique beauty, I felt a responsibility to Lucy to familiarise all the students in the school with her before school began. The summer before she started school, I wrote a child-friendly letter that could be read to all classes, explaining Lucy’s condition and answering any questions I thought might arise when she started school. I wanted the children to be comfortable around Lucy. All children are naturally curious in life; it is up to us adults to nurture and mould an understanding and kindness in our children. When we heard back that one little girl exclaimed ‘write back to her and tell her not to worry about a thing because we will
take care of her,’ I actually had to hold back the tears. That day cemented our hope for the new school year; hope for acceptance, hope for friends and hope for understanding.
For any parent reading this, I would love them to have a simple chat with their children about how they might react when they meet a different beauty. Talk to them. Prepare them for other kids who may be different. Teach them to appreciate the strengths and gifts that others have to offer. Explain to them why differences are so wonderful, why they make each of us so special. Too many of us get stuck in a never ending cycle of chasing the next best thing that we forget to really live, feel and experience the beauty we have created.”
- Carleen Gallagher, Lucy’s mum.