A Clonmel child who was born with an illness so rare that she is Ireland’s only sufferer enjoyed a very special weekend in Dublin recently.
Abie Lawlor, aged 9, the country’s only sufferer of Congenital Sleep Hypoventilation Syndrome, and her mother Rosie Lawlor were treated like VIPs on their trip to the capital, which was organised by children’s charity The Bubble Gum Club.
The weekend included three nights bed and breakfast in The Royal Marine Hotel in Dun Laoghaire; a trip to Dublin Zoo; tickets for The Lion King in the Bord Gais Energy Theatre; a Garda escorted journey from Dun Laoghaire to Dundrum in a pink stretch limousine; a €1000 shopping spree in Dundrum Shopping Centre, with hair styled by Peter Mark’s and nails done in Pink; a helicopter ride from Newcastle Aerodrome around Wicklow and to the Druid’s Glen Hotel and Resort for lunch; a trip to Sea Life in Bray; and an appearance on TV3’s The Morning Show with Sybil Mulcahy and Martin King.
“We had a ball and Abie had a really great time. It was all go from the minute we got up there”, Rosie told The Nationalist.
Abie, from Ashgrove Lawn, Ballingarrane, needs to be ventilated with a tracheostomy tube when she sleeps at night. She currently has a night nurse, Carolyn Fanning, to supervise this ventilation every night.
“Abie is great. She is fine during the day, just like any other child, but her whole body shuts down at night”, says Rosie.
Although she has to live with the condition it’s hoped that in time Abie will be able to use a face mask for her night time ventilation, with the possibility of a pacemaker vest being fitted when she reaches her late teens.
Rosie cares for Abie during the day every day, apart from three nights respite break each month. She lived in hospital until she was 2, which was reduced to five days a week until she was 3 and four days a week until she was 4. She is now home on a permanent basis.
“I’m used to it, it’s just like any mother looking after her child”, says Rosie.
She says that she also receives great support from her family and is extremely grateful to nurse Carolyn Fanning for contacting The Bubble Gum Club - which helps children who are terminally-ill, have life-threatening illnesses or are in crisis in some way - to share Abie’s story. Due to medical and financial circumstances she and Abie had never managed to enjoy an overnight away.
Rosie says that of the weekend’s many activities Abie enjoyed shopping in Dundrum the most, as well as getting her hair and nails done. The helicopter ride, the performance of The Lion King and lunch in the Japanese restaurant were other highlights.
She was also delighted to get a cuddle from Karen Koster and have her picture taken with the TV3 Expose show presenter, which she proudly showed to her classmates at the Presentation Primary School.