The parents of a girl with an exceptionally rare medical condition have said the extreme kindness of the public has funded “life-changing” renovations to their family home, writes Elaine Keogh.
Lisa Flynn said that her daughter Kate, 4, has a genetic condition never recorded anywhere in the world before.
The condition means that Kate, who is perfect intellectually, cannot breathe on her own and needs around-the-clock care.
“Kate’s brain does not send her body the necessary signals to breathe,” Lisa said. “As a result, she has a breathing tube in her neck and she is dependent on a ventilator nearly 24 hours per day.
Without her ventilator Kate would not be alive. If Kate gets very upset she has the ability to close off her airway, she will go unconscious and need resuscitation. It could happen from a simple fall where she cuts her knee or if she is afraid of something.”
She said both herself and Kate’s dad Mark are fully trained in their daughter’s care and have had to save her life on numerous occasions.
“Once when she was sick, I resuscitated her eight times in one day,” Lisa said. “For this reason, Kate can never be left on her own even for a moment.”
The family, who live in Cobh, Co Cork came to public attention last Christmas when Mark did a good deed by opening up the Santa Grotto at Dunnes Stores, Patrick St, Cork, for a family who had got their dates wrong.
The media exposure resulted in Lisa getting to tell their story about their fight for what Kate needs.
The family was desperately trying to find the money to adapt their three-storey home so Kate could have a proper bedroom.
“Kate’s bedroom has to be on the ground floor. The only room available was a small store room off our kitchen. It has no windows and so no access to natural light or fresh air.
“Kate still sleeps in a cot because the room is too small for a bed. She is bathed in a baby bath on the kitchen table because the bath is on the third floor of our house and it would not be safe or practical to carry Kate, her ventilator and all her resuscitation equipment up and down all the stairs.”
To their delight Douglas- based Sigma Homes is going to renovate their home at a vastly reduced cost of €80,000.
“Thanks to the extreme kindness of the people of Cork and Ireland who heard our story on the Neil Prendeville radio show, that money has now been raised,” Lisa said.
This article first appeared on the Irish Examiner.