'It was the trip of a lifetime, and a break from our normal lives of medication, and hospitals'
Every year, the Make-A-Wish Foundation makes dreams come true for hundreds of children living with life-threatening illness and for little Sean Reynolds from Athlone, that meant meeting Santa in Lapland, writes Arlene Harris
All over the country, there are thousands of children with life-limiting and life-threatening illnesses who spend most of the year visiting doctors, undergoing tests, taking medication and enduring lengthy stays in hospital.
Living and coping with illnesses such as cancer, cystic fibrosis and Duchenne muscular dystrophy is all-consuming and affects not only the child who is suffering, but also their entire family who would do anything to take their pain away and help them to forget their condition and enjoy some carefree childish fun - even for a day.
So every year, the Make-A-Wish Foundation grants the wishes of as many of these children as possible. But it needs funding to continue to bring smiles to the most vulnerable in our communities and has just launched its Christmas appeal to help raise awareness and funds.
Since 1992, over 2,500 dreams have come true and last year alone, 211 wishes were granted - these included children getting to meet their favourite popstar or cartoon character, publishing a novel, going on the trip of a lifetime with their family or even having their bedroom or garden transformed into a special place for them to enjoy.
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Seán Reynolds is one of the lucky ones who had his wish come true in 2018 when he and his family went to Lapland to meet Santa Claus. Having been diagnosed with cystic fibrosis (CF) as a baby, the seven-year-old's life is very much dictated by his daily routine of medication and physiotherapy, as well as regular hospital visits.
"Seán was diagnosed after the newborn screening (heel prick test) when he tested positive for CF," says mum Lorraine. "He then had to have a sweat test (a diagnostic test for cystic fibrosis) to confirm it, and he was just three weeks old when he was officially diagnosed. Then we spent a couple of days in Crumlin hospital going through his treatment plan before we were finally allowed home."
It was undoubtedly extremely difficult for the family to deal with this unexpected condition soon after the arrival of their new baby and Lorraine says it continues to determine how her son lives his life.
"The condition affects Seán in lots of ways," she says. "First of all, his digestion is affected so he has to take Creon (digestive enzymes) with his meals as his pancreas does not produce sufficient enzymes to break down the fat in his food and a lot of the time, he get pains in his tummy due to this.
"He also has to do chest physiotherapy every day to make sure that no mucus lodges in his lungs. This includes inhaling saline through a nebulizer and then using a device called acapella, which opens the air ways - after this, he has to do some huffs (deep coughs to release phlegm) using a mirror or tissue."
Lorraine, who is married to Keith and lives in Athlone, says her young son loves doing the things most little boys like to do, but much of this is curtailed due to his condition.
"Seán - who has two siblings, Amy (9) and Harry (5) - enjoys Gaelic football, hurling, soccer, swimming and cycling, but doing any sport was always difficult for him until he started his new medication, which is called Kalydeco," says the mother of three. "This has really changed his life for the better as it treats the cause of his condition, so the pains have most definitely eased since he started it and it has given him a much better quality of life.
"He also loves science experiments, baking and going to Beavers (scouts) as well as his two dogs Bailey (a golden retriever) and Sam (a bichon frise).
"But things can be hard for him as he has a lot of medication, treatment and hospital routines to attend to."
The idea of getting away from it all to somewhere magical hadn't occurred to Lorraine until they met another family who had benefited from the Make-A-Wish experience, and she got to thinking that it would be a wonderful surprise for Seán and his siblings.
"Amy met a little girl called Izzy whose wish was to see the Northern Lights," says the Westmeath woman. "I got talking to her mum and she had told me about Make-A-Wish, so I said it to my husband Keith, and he rang the foundation who went through everything and sent out all the paperwork.
"We had asked Seán what he would choose if he had one wish. He didn't even need to think, but straight away said he'd love to visit the real Santa in the North Pole, so that was it."
The charity aims to make wishes come true for children living with life-threatening illness (not necessarily terminal), aged between three and 17 years of age. And as Seán was eligible, his application was processed, and he was successful. So his wish to meet Santa in the North Pole came true last year when he and his family jetted off to Lapland.
"When Seán found out his wish was granted he just couldn't believe it and was so excited," says Lorraine. "Also for us as a family, being granted this wish was a dream come true - we all love Christmas time but getting the chance to go to Lapland was unbelievable. It was a total break from our normal lives of medication, treatments and hospitals - and all the time we were there, we forgot about his condition, and what it involves, for an entire long weekend. It was the trip of a lifetime from beginning to end - for all of us."
Launching its Christmas Appeal, the charity has just announced that it is working to send eight seriously ill children from all over the country on very special Lapland trips to meet Santa, Mrs Claus and all the elves as they prepare for the busy Christmas season ahead.
"Christmas is a special time for everyone but for the families of those children with life-threatening illnesses, it is tinged with sadness," says Susan O 'Dwyer, CEO of Make-A-Wish. "They need a spark of hope and happiness to reboot their energy and rebuild their resilience.
"Tragically, some wishes are 'rush wishes' where the life expectancy of the child is less than nine months - and for these children, Christmas cannot come early enough.
"But each wish granted is true magic for the child, providing respite from their normal routines of hospitals, doctors and treatment.
"Research shows those who have wishes granted are more likely to build the physical and emotional strength they need to fight a critical illness, which improves their quality of life and produces better health outcomes. And the families that the charity works with report this every day - they have seen first-hand the almost magical power of granting much-hoped for wishes."
Make-A-Wish Ireland does not receive any government funding and is solely dependent on the generosity of the general public. This public support is crucial for Make-A-Wish to continue granting the wishes of children living with life-threatening illnesses.
Visit makeawish.ie or call 01 205 2007 today to help transform lives, one wish at a time
ABOUT CYSTIC FIBROSIS
● Cystic fibrosis (CF) is an inherited chronic disease
● It is a multi-organ condition which primarily affects the lungs and digestive system. A defective gene and its protein product cause the body to produce unusually thick, sticky mucus which clogs the lungs and leads to life-threatening infections, obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food.
● Ireland has the highest incidence of cystic fibrosis in the world with approximately 1,300 people living with the condition
● About 25 new cases are diagnosed in Ireland each year
● The impact of cystic fibrosis can vary from one person to another - some live until their teens while others live into their 50s and beyond
● Symptoms include;persistent coughing, sometimes with phlegm, frequent lung infections, wheezing or shortness of breath, poor growth or weight gain despite a good appetite, difficult bowel movements and very salty-tasting skin.
● Because of newborn screening, most babies with CF should now be diagnosed quickly.
For more information, see cfireland.ie