Siobhán’s smile says it all
Tony Noonan’s home in Tullig North, Templeglantine is well-known all over Munster. Many years ago, he and his family decided to open their home at Christmas by decorating it in thousands of lights and ornaments, creating a winter wonderland for children everywhere to enjoy. For years, locals associate the start of the Christmas Season with the turning on of Noonan’s Christmas Lights. It has brought incredible joy to families down through the years, and more importantly, funds raised from people’s donations to a simple bucket placed outside has ran to hundreds of thousands of euro benefitting various charities. This involves a huge amount of work, weeks in advance, and Tony has taken it all in his stride in a spirit of goodwill. “Siobhán loves lights” he told me, referring to his daughter. That said it all.
Siobhán Noonan, who is thirty-nine years old, has special needs and suffers from Rett Syndrome. For those who are not familiar with the syndrome, it is a rare genetic neurological disorder that occurs almost exclusively in girls and leads to severe impair-ments, affecting nearly every aspect of the child’s life: their ability to speak, walk, eat, and sometimes even breathe easily. It was reported in 2016 that there were fewer than seventy cases in Ireland. Siobhán needs 24/7 care. She lives at home in Tullig North, Temple-glantine, Co. Limerick with her parents Tony and Hannah and is their only child. In 2003, at the age of twenty-three, she got a placement in Day Services with the Brothers of Charity, Foynes. Prior to this, she was cared for at home by her parents. From 2003 to 2018, because the service was unable to provide transport for Siobhán, Tony decided to give up work in order to drive her to Foynes every day, clocking a total of four hundred and eighty miles weekly, a job in itself. Tony then dis-covered that the service was collecting a new user in Newcastle West, just a few miles from their home. He and Hannah fought and won the battle to have Siobhán collected also. The Noonan Family annually contributed to the charity through their Christmas Lights initiative.
Siobhán needs one to one care which she receives from her key worker who was solely appointed to her. But when the service closed on March 13th last due to Covid-19, Tony, Hannah and Siobhán found their lives had been turned upside down. Tony told me “Our then government decreed to close all non-essential services, but they forgot that my daughter’s service was absolutely essential. For twelve long weeks, we had no contact from the Brothers of Charity, not even a quick phone call to ask how Siobhán was doing. This speaks volumes. It tells its own story for another day”.
He went on to say “As a family, we could have made an easy decision thirty-nine years ago and had Siobhán put into residential care, costing the State several million euro. But that never crossed our minds. That was never going to happen”.
They were told that Siobhan’s key worker had been deployed to another service within the Brothers of Charity, caring for someone else. To her parents, it was a terrible blow, and seemed a total lack of respect for their daughter.
Speaking about lockdown, Tony said “Cocooning with Siobhán is a huge challenge. But we are strong. Since our story got national TV/media coverage, our eyes have been really opened. We never wanted to expose Siobhán to the public eye. This is the first time she’s ever been on TV (Virgin Media). It was a hard decision to make but we felt we had to do it in the hopes that it helps others who have no voice or nobody to speak up for them”.
When a reporter contacted the HSE, he was told by someone in management that they never comment on individual cases. But Tony and Hannah have a very clear message for management. “Come out from behind your cosy office, stop hiding behind your computer and face our daughter and explain why she has been treated in this manner. If the department can’t do that, it should be ashamed.” Tony stated angrily. “We would like to remind our Government and our service providers that Siobhán is a citizen of this country and is fully entitled to be treated with love and respect. We’ve simply lost confidence in the system and are extremely disappointed with the Brothers of Charity”.
Tony’s frustration is evident. He’s a man that’s slow to anger but feels his beloved daughter has been let down considerably. He went on to tell me “So now it’s been nineteen weeks without a service. I have made huge efforts and many phone calls to get Siobhán back to full time service, but it’s looking like she will not get full time service for a long time. They have offered nineteen hours service a week for the next six weeks, but this is an insult to our family”. Tony is grateful to Councillor Liam Galvin for his help in the matter. Liam told him “We’re in this together”. He also wishes to acknowledge the silence of other representatives who have been of no help.
“Going public with the issue has been a very tough decision for us. But by doing so, we’re highlighting the unfairness and apparent lack of respect for the most vulnerable in our society. We know that roadmaps are put in place for businesses to open, but there’s nothing for loved ones’ special needs. I believe the government and the special advisors should hang their heads in shame”. A good friend of Tony’s recently rang when he saw the story on TV. He asked him “Do you realise you’re up against the might of the State and have a massive battle on your hands?” Tony looked at his daughter, sitting alongside and looking up at him and answered “As long as I have blood in my body, I will not allow her to be degraded or discriminated against”.
He finished by saying “Our battle goes on and I’m now calling on the Disability Minister, anyone in the HSE or in the Brothers of Charity to contact me to discuss this very serious issue”. Tony’s number is 087 2762663, and email is tonynoonan50@gmail.com.
There can be no doubt that caring for an adult special needs’ child is challen-ging. For twenty-three years, they cared for their daughter without any state aid. For parents of special needs children, it’s a huge leap of faith to entrust a child’s care to others, but exhaustion will eventually decree that help is needed. Tony and Hannah are now in their sixties and caring full time for Siobhán takes a toll on physical and mental health. Frustration alone has caused the Noonan Family to question the decisions that are made in the higher echelons of several government departments. And to reiterate that the vulnerable among us have rights and life purposes just like any other. It’s to be hoped that the strong voice of the Noonan family will be heard.