BY SEÁN P. FEENY
THE parents of a baby with an extremely rare skin conditions have said they have been overwhelmed by the support they have received.
In February the Donegal News first reported on 11-month-old baby Lucy Gallagher who with a rare genetic skin condition called Harlequin Ichthyosis.
A real bundle of joy, Lucy is literally one-in-a-million as she is the only one with the condition in Ireland and there are less than 100 world-wide.
Lucy’s condition means that each day she makes too much skin, which results in thickened plaques and scales with fissures between them.
The daily implications of this means that Lucy needs to have alternating baths with chemicals or bleach, where the entire body has to be soaked and scrubbed.
During the day and night her head is creamed and bandaged every two hours and the rest of her body is creamed and bandaged three hourly. Manuka honey is applied each morning and evening to her entire head and face area to minimise bacterial infection.
Lucy’s eyelids, nose and mouth are under a constant pressure to turn inside out. She gets her eyes washed out and lubricated every two hours as unfortunately, she does not have tear ducts and does not always use her new eyelid grafts to blink or fully close her eyes when asleep. If her eyes are not kept moist and clean, a second eye infection could happen which may result in additional vision loss.
To date, Lucy has undergone six eye surgeries and is visually impaired in both eyes. By carrying out this regime each day and throughout the night, her parents hope that she might be pain-free, have increased movement and minimise skin infections which are life-threatening, partly due to the difficulty in finding her veins and subsequently securing intravenous lines if necessary.
After eight months at Our Lady’s Hospital for Sick Children in Crumlin undergoing treatment Lucy was finally allowed to come home Maghery with her parents Carleen and Gary. Her parents were so delighted when they were first able to take their daughter home, initially for a month’s trial and then for good.
Lucy’s story touched the hearts of not only her local community, but the whole county and much further afield and Carleen and Gary said they are grateful to everyone who has supported them over the past 11 months.
Carleen said: “The support, kindness and generosity shown has been overwhelming and extremely humbling. The way that the community has welcomed Lucy has meant so much to our family and has helped make our journey so much easier.”
Lucy is at home presently and is doing well. She continues to attend Crumlin Hospital for monthly Dermatology and Ophthalmology clinics. Carleen said Lucy rarely complains and is currently busy showing off her two new teeth when smiling.
Hopefully, Lucy will be able to meet everyone and thank them in person herself over time.
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