‘I thought we had lost him’ – Kilkenny boy wonder Michael’s battle against all the odds
By SINÉAD CONNOLLY
MICHAEL Butler is one of Kilkenny’s bravest and most special little boys.
Just six-years-old, Michael, with the loving support of his parents Lorraine and Ned, has battled against the odds all his life.
He was diagnosed with Paediatric Neurotransmitter Disorder when he was just one years old. But he also suffers from Severe Progressive Dystonia, Epilepsy, Spasticity, Microcephaly and Global Developmental Delay.
Michael is unable to talk or walk and has very little muscle control.
This week was a particularly difficult week for Michael and his family.
The Talbotsgate boy was gravely ill in Temple Street Children’s Hospital in Dublin. His mother Lorraine Butler admitted she was terrified he was going to die.
“I thought we had lost him,” Lorraine told KilkennyNow.ie.
Michael had to go Dublin because he had aspirated on his own saliva. Then he suffered a collapsed lung.
“We were there for nine days in total, five days in ICU. It was touch and go on two occasions,” Lorraine admitted.
Home now, but with a weaker immune system, Michael needs more nursing care more than ever.
A ‘Battle of the Groups’ fundraiser is being held at the Ormonde Hotel tonight at 7pm which aims to raise money for much needed nursing care for Michael.
Lorraine and Ned only receive 18 hours of nursing care from the Health Services Executive (HSE), and with two other children, Abby (11) and Eddie (2) home-life can be a juggling act. Lorraine is grateful for the HSE nursing care, but would like more hours to make their life a little more manageable.
“I am getting 18 hours a week from the HSE which is tight. Ideally we would like 25/30 hours a week to have some sort of quality of life with our other two kids,” Lorraine explains.
Lorraine and Ned have paid for nursing services themselves in the past but Michael’s ill-heath means that Lorraine hasn’t been able to work regularly in her part-time job in the last few months. Ned has also been off work over the past two weeks while Michael was gravely ill in the hospital.
The fundraiser, which is organised by Alize’s School of Singing, includes music, spot prizes and guest judges.
If you would like to give your support, you can call Alize directly on 083 408 8014, or
follow Lorraine, Michael and their family on Facebook: https://www.facebook.com/Michaels-Wonder-Journey-1565097247055720/