Gary and Carleen Gallagher with baby Lucy.
EXCLUSIVE BY SEÁN P. FEENY
A WEST Donegal baby born with a very rare skin condition has spent her first three weeks at home having spent the last eight months at Our Lady’s Hospital for Sick Children in Crumlin.
Lucy Gallagher was born on August 8, 2012, weighing 4lb 14 ounces, with a rare genetic skin condition called Harlequin Ichthyosis. She is the only one with the condition in Ireland and there are less than 100 world-wide.
A concert has been organised at the Maghery Community Centre to raise funds for the Dermatology Unit at Our Lady’s Hospital for Sick Children with music by Over The Hill, various local artists and a very special guest, Daniel O’Donnell.
Three weeks ago Lucy finally quietly made her way home to Maghery for the first time with her parents Carleen and Gary. Lucy and her parents have waited eight long months for this very special moment.
Carleen said: “We were just so delighted when Lucy was finally discharged for a month’s trial, it has been our aim since the day she was born to get her home and it was a wonderful moment when we finally took her down the lane to our house in Maghery.
“It has been fantastic to have Lucy at home and later this month, we are going back to Crumlin for a CT scan to see if there is still any infection in her lungs.”
Carleen and Gary had spent a lot of time at Our Lady’s Hospital and were trained by the doctors and nurses in how to take care of Lucy’s needs and her daily regimen.
Carleen said: “We were just so delighted when Lucy was finally discharged for a month’s trial, it has been our aim since the day she was born to get her home and it was a wonderful moment when we finally took her down the lane to our house in Maghery.
“It has been fantastic to have Lucy at home and later this month, we are going back to Crumlin for a CT scan to see if there is still any infection in her lungs.”
Carleen and Gary had spent a lot of time at Our Lady’s Hospital and were trained by the doctors and nurses in how to take care of Lucy’s needs and her daily regimen.
“That really helped build our confidence and assure us that we would be able to go through Lucy’s daily beauty regimen, as we called it, and it wouldn’t be too overwhelming.”
Lucy lacks a protein that allows her skin to develop correctly. To try to make up for this missing protein, her body makes too much skin which she can’t shed quickly enough.
This meant she was born with thick, yellow scales – almost like armour – with deep red wounds over her entire body.
This thick skin pulled tightly, causing constrictions. Her eyes, mouth, ears, fingers and toes were most affected.
Lucy daily regimen includes washing out and gelling her eyes every two hours, putting cream on her scalp and head, and putting on fresh bandages on her whole body every four hours.
A very big undertaking for a young couple, but Carleen are very thankful to be receiving the assistance of night nurses who take care of Lucy from 8am to 8pm seven days a week.
Carleen said: “The night nurses came up to Dublin with us where they were trained by the staff in how to take care of Lucy’s needs. They have been a huge help to us.”
Lucy’s parents are thrilled with the progress their baby has made since coming back home, Carleen said: “She has really thrived and the Donegal air has been really good to her, she slept the first three days she was home.
“We meet the public health nurse once a week and Lucy has put on half a pound every week she has been here. A lot has happened to Lucy, but she has slowly got used to her surroundings and is looking around and is very interested.”
The couple kept it very low key that they had brought their baby home to Maghery. Baby Lucy has received a lot of support from the public, but unfortunately she is not yet at a stage where she can meet to many people due to risk of infection.
Carleen said: “At our own request, we kept it very low key so we ourselves would be able to get used to Lucy’s routine, but also from a point of infection risk, it was important and hopefully when we go to Dublin next Monday, she will get another all clear.”
Maghery Concert
Carleen and Gary will be in Dublin for several days while Lucy undergoes tests, but they hope to be back before Sunday, May 5, as their community in Maghery has organised a very special fund-raising event at the local centre.
Carleen said: “We have been so grateful for the support we have received for Lucy. “The book Heroes In The Classroom compiled by the students at Rosses Community School is on its third print run already and we’re honoured they decided to raise funds in Lucy’s name.
“There have also been other fund-raising initiatives, like the 5k fun run and walk on the Dungloe Women’s Weekend, but when the organisers of the concert approached us we asked them if they could do it for the unit at the hospital.
“While Lucy was in Crumlin we received so many letters from people in Donegal, well-wishers and people telling us their stories and the skin conditions they have.
“These letters really helped us and we realised how much great work the unit does for a lot of children in Donegal and all over Ireland with skin conditions.
“We are so grateful to the organisers, all the local stars, including Daniel, for appearing at the concert and we certainly hope to be there to show our support. We would like to take this opportunity to once again thank everyone for their prayers, well-wishes.”
Admission to the concert at Ionad An Mhachaire is €15 and by ticket only. They are available from PJ Sweeney at Books & Charts, Dungloe, or the Maghery centre itself.
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