"Lucy is a spirited, feisty, determined and so funny seven year old. She has a great zest for living that can only be admired. She loves all things pink - unicorns, rainbows- the louder the better! She loves school and is thriving there - she really is a social butterfly.
Lucy also has a genetic skin condition called Harlequin Ichthyosis. There is no cure. Lucy is currently the only Irish child with the condition. Since Lucy has been born there has been one other case but sadly at several weeks old, that baby passed away.
For our family change began with an exciting journey to Letterkenny hospital. Lucy was born on the 8th of August - a Wednesday night - by emergency section. We were blissfully unaware of what was about to unfold. No scans had detected Lucy’s condition so we were there as first time parents expecting to bring home our baby three or five days later.
Things took off at a rollercoaster pace. Once Lucy was born it became instantly apparent that something was wrong. Her condition is a very visible skin condition and she was born covered in very thick yellow plaques and was so restricted that she was basically unable to move. We were told that if she survived the night she would be transferred to Crumlin the following morning.
Thankfully she did and she was transferred to Crumlin the next day. My husband Gary followed immediately and I followed two days later. Crumlin then became home for us for the next eight months.
Our world had been flipped upside down. It felt like we were in a time-warp - a little bubble of our own. Whilst the world outside the hospital kept moving it felt like we were living each day on repeat. Without the interaction of the nurses and consultants I don’t think we would have been able to cope. The consultants became our immediate family, the nurses our best friends.
When it finally came time for Lucy to go home, we were a complete mixture of emotions. The hospital had been our safety net for the past eight months. Of course we were ecstatic as we had never allowed ourselves to indulge in the hope that someday we might leave with Lucy but we were also extremely nervous because suddenly this little bundle was our sole responsibility.
Lucy’s care is 24/7. Every day she gets a 2-3 hour bath in the morning where her entire skin needs to be scrubbed off. She’s creamed and bandaged after that. She’s then re-creamed and re-bandaged every 3 hours after that both day and the night. Lucy’s eyes still don’t close fully when she’s sleeping so in order to prevent blindness and retain what sight Lucy still has we have to do eye care with Lucy every single hour, day and night. When her eyes gunge up Lucy knows to ask for sparkly eyes, which involves us washing her eyes out with saline solution. She also requires PEG feeding because she grows 14 times as much skin as you or me every single day.
Despite all of this Lucy is full of life. She knows what she can do and reassures her parents when things are tough that it’ll be okay. We would never say anything to Lucy about the extra time her care takes or how it impacts the family. Yet Lucy has an awareness because on New Year’s she came up and hugged Gary and I and said thank you for everything you have done for me in 2019. I laughed and said “but Lucy we don’t do anything extra for you.” But she just stopped and looked up at me and said “Mum, I know - it’s okay.”
When it came time for Lucy to start school we received invaluable support from our community. No one in Lucy’s school had ever dealt with Ichthyosis before but the staff were more than willing to learn. Lucy’s school now boasts new flooring and paintwork throughout, wheelchair accessible doors, a disabled toilet, a separate room for carrying out PEG feeding, creaming and bandaging, a shaded soft play area and new wipeable furniture and equipment.
As a parent of a child that tends to attract lots of attention due to her unique beauty, I felt a need to familiarise all the students in Lucy’s school with Lucy before she began. I wrote a child friendly letter explaining Lucy’s condition. When I heard back that one little girl had exclaimed “write back to her and tell her not to worry about a thing because we’ll take care of her” our hopes for Lucy for friendship, acceptance and understanding were cemented.
I am so grateful for the work of CMRF Crumlin. Without the fundraising done pre-2012, Lucy would not be here with us today and that is a fact. Every euro donated has ultimately made a huge difference to Lucy’s life. Nobody thinks when they go into hospital to have their baby that anything could go wrong. They expect to walk out a few days later with a bundle of joy in a baby car seat. But unfortunately, for many, many parents that story doesn’t materialise. Instead Crumlin becomes home for days, weeks, months and sometimes even years."
- Carleen, Lucy's Mam
With your support we will continue to do #WhateverItTakes for children like Lucy.