Surprise brings tears of joy for one Cork family at charity's Santa extravaganza
Twins, James and Robert Levis wth their parents Vicky and Ivan from Carrigaline at the Cork City Hospitals Children's Club Winter Wonderland event at SuperValu Pairc Ui Chaoimh in Cork City. Picture: Jim Coughlan
It was a moment Ivan and Vickie Levis will never forget and that saw an entire Santa’s grotto reduced to tears.
The Cork City Hospitals Children’s Club pulled out all the stops for the Levis' twin boys — 15-year-old Robert and James from Cork — who were among around 270 children attending the charity’s two-day festive extravaganza.
One of the most anticipated events was the Santa’s grotto experience which many children with complex medical needs might not otherwise have the chance to experience. The Levis family were looking forward to their usual meet and greet with Santa.
However, it wasn’t until a few minutes into the visit that they realised he had an extra present for them. Santa revealed that the boys and their family will be travelling to Disneyland, Paris, with the charity next year along with dozens of other children.
The announcement was just one of the highlights of the event that included a blue light convoy transporting deserving children to SuperValu Páirc Uí Chaoimh. Now in its 20th year, the festive fun had everything from face painting to live entertainment and Disney characters.
Vickie Levis’ identical twin sons are wheelchair users and non-verbal due to an extremely rare condition called SSADH which affects only 450 people in the world. She described how much the gift of a Disneyland trip means to her as the parent of children with such complex needs.
“There are only a couple of hundred of people in the world with this disorder and we have two of them,” she told the . “Any trip away on our own isn’t possible because you need all hands on deck. If it was just one you would manage but with two it’s really difficult.
"When they were younger it was easier but now that they are getting bigger they need lifting and hoisting which makes it impossible. We also are unable to hire a car because there are two wheelchairs. You would be surprised at the amount of things you can’t do when you have children with such complex needs.”
The family were part of a previous Disneyland trip a number of years ago.
“When there are other kids in the group in similar situations you don’t feel like an outsider. We are all part of the same gang and it’s very inclusive. Our last trip to Disneyland was life-changing because it’s too difficult for us to go away on our own.
"We are shocked and so grateful to the Cork City Hospitals Children’s Club that the boys will have the chance to experience this again.”
Her husband Ivan also spoke of how the trip benefitted the trips.
“Some children find it difficult to interact with the boys at home but it was different in Disneyland. All the children engaged with them and there were no barriers.”
Other families at the event included Lynda, Rueben and their three-year-old son Noah Dean who has Snyder-Robinson syndrome which is characterised by intellectual disability, muscle and bone abnormalities, and other developmental issues.
Noah has extremely complex medical needs and has to be tube fed. The couple’s older son Eli also attended the event. He was recognised for the extraordinary compassion he shows towards his little brother.
“He is always asking to help with his care,” Lynda told the . “His dream is to be a nurse when he grows up. Noah was five months old when we received his diagnosis. Eli had to grow up very quickly as Noah has been in and out of hospital since he was very small.
"He knows everything about his condition and what medicines he needs. He always tries to help out.
"We try to do as much as possible when the Jack and Jill nurses Deirdre and Michelle are minding Noah.”
Deirdre Sturdy — a nurse with Jack and Jill Children’s Foundation which provides up to 100 hours per month of in-home nursing care and respite support to families caring for children — was there to support the Dean family.
“If you had to go see Santa anywhere else there would be huge queues and waiting times,” she told the . “This allows families like Noah’s to be here together doing normal stuff that many other families take for granted.”
Jennifer Crowley was joined by her three-year-old daughter who has had a tough year with many hospital visits.
“Cora has Spina Bifida and a VP shunt which controls the excess fluid in her brain. This often makes her very unwell so there have been a lot of hospital visits. It’s been a really great day. Healthwise, Cora is doing well at the moment. Touch wood that will last.”
John Looney founded Cork City Hospitals Children’s Club after being inspired by his own children, Pamela, Noelle, Clodagh, and Karen — all now grown up.
His children are now volunteers with the charity, and accompany him on trips and at events.
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