THE pandemic sent shockwaves into lots of different areas of life.
The Cliffe family of Youghal suffered the temporary loss of a lifeline — the brilliant nurses of the Jack and Jill Foundation who give families a respite from dealing with a sick child.
“The 32 hours we get from the wonderful Jack and Jill nurses are like a miracle,” says Tommy Cliffe, father of two-year-old Luke, who was diagnosed with Dravet’s Syndrome a rare form of epilepsy.
When the service was put on hold, Tommy and wife Karen — who also have a son, Charlie, aged six — found if difficult.
“Karen and I are delighted that the Jack and Jill nursing respite service can resume again,” says Tommy. “Our three liaison nurses became part of our family. We really missed them during the pandemic.
Old friends instinctively know how to offer solace and consolation by just being there for you.
“Karen and I both work,” says Tommy. “I am a paramedic with the ambulance service and Karen is in retail in her family business. It was a really busy time during the pandemic. I do a lot of night shifts and Karen is gone during the day. It was hard for us to juggle work and caring for the boys.”
Everyone needs time out.
“The Jack and Jill nursing service gave us a chance for a bit of chilling time,” says Tommy.
“When the girls came to mind Luke, it was great to get the chance to go out for a pint, go for a walk, and get to spend a bit more time with Charlie and to give him a bit of attention. He can often get left behind.
“The nurses live locally and they have ICU, paediatric and community residential nursing experience.”
Luke knows them well.
“The Jack and Jill nurses have been coming to our home for over a year now,” says Tommy.
“The girls have grown up with Luke! We all missed the nurses calling during Covid-19. We got used to them being around and got used to the precious 32 hours of care they provided for Luke.”
The youngster instantly re-connected with them when the nurse visits resumed.
“He knew them straight away and went straight up to them,” says Tommy.“It is so cute. The Jack and Jill nurses provide reassurance and they give us a breather.”
However, he adds: “It is a bit different this time around with social distancing, We’re making sure to use face masks and have extra sanitiser for everyone to use around the house.”
You can always rely on old friends.
“When we had something on, we could always liaise with the Jack and Jill nurses to arrange for them to come here to look after Luke,” says Tommy. “Karen and I could enjoy a rare night away together, which was a real treat. The nurses are always willing to accommodate us.”
Old friends are there for you through thick and thin.
“We are always in touch with the Jack and Jill nurses,” says Tommy. “We celebrate birthdays together and exchange Christmas presents. They are there for us all the time.”
Chill-out time recharges the batteries.
“Because of Luke’s syndrome, he is a poor sleeper,” says Tommy. “That has a knock-on effect for the family. We feel lucky. Many children requiring the Jack and Jill nursing support have respiratory needs or have to be tube fed. Many children need 24/7 care.
“With the fantastic support of the Jack and Jill nurses, we get a chance to get time out and recharge the batteries.”
Life was a bit more challenging for families during lockdown, juggling work, paying the bills, managing childcare and trying to maintain a semblance of normal family life. Needing extra care for a family member proved even more draining physically and emotionally.
“It was hard adjusting to not having the essential services that the Jack and Jill nurses constantly provided us with,” says Tommy.
“We got so used to that and were so grateful for it. During lockdown we didn’t go anywhere; we were terrified to go anywhere. Being on the frontline, I was very aware I could pick up the virus, or Karen could. So we had to be extra vigilant in making sure we didn’t bring the virus back to the house. Basically we were in isolation at home. At any stage Luke could be admitted to hospital and one of us always have to be with him in the ambulance and in hospital. That added to our fear during the virus.”
With Dravet’s Syndrone, development in children is usually normal in the first two years but they may not progress as quickly as they get older or have more seizures. The illness is medication resistant.
“Getting the right medication and the right balance of medication for Luke is very important,” says Tommy.
“There is no cure for Dravet’s Syndrome. We hope new medications being researched and trialled will be the way forward. We know Ava Twomey had good results from CBD oil.”
“It was frightening at the start,” says Tommy of the diagnosis. Even though I am a qualified medic, it is a bit different when it comes to your own child. Luke was diagnosed with Dravet’s Syndrome when he was four months old. Since 2019, he has had close on 27 admissions to hospital for seizures.”
Luke gets the best of care.
“We have a fantastic team at CUH,” says Tommy. “The neurological team and the two Cork neurological consultants and their nurses are excellent. We connect with the medical staff at CUH almost every day; more so in recent times. They inform us about new treatments and advances. The CUH staff are our go-to people who are always available for us.”
There is no warning to indicate that Luke is going to have a seizure.
“He seizes a lot,” says Tommy. He is temperature sensitive and sensitive to the environment. A shower, for instance, could cause him to have a seizure. He is prone to infection.”
Luke’s older brother, Charlie, looks out for him too.
“They are great pals,” says Tommy. “Charlie is a god lad. He is good at spotting his brother’s subtle signs that a seizure is about to happen. He runs to get the thermometer for us and Charlie sits beside Luke and holds his hand.
“Charlie often says ‘He was frightened by that one’.”
Luke, who is a happy chappie, likes charging his batteries too.
“Boy, he is a devil!” says Tommy. “He has no interest in toys, even though he does like musical toys. His favourite is his keyboard.”
Luke is creative too
“He can spend all day taking water bottles and milk bottles out of the bin!” says Tommy.
The toddler is very sociable and communicative. “He knows how to make his presence felt! He is his own person.”
And he likes spending time with his brother.
“The two lads are great old buddies,” says Tommy. “They love running around together.”
Tommy and Karen enjoy family life together, enjoying simple treats that we’ve all come to appreciate in the recent climate.
“When we have the services of the Jack and Jill nurses and are both off work together, we can enjoy a couple of treats,” says Tommy. “We like spending time together with Charlie and with Luke. Luckily, Luke is having a good run of it.”
Friends and family enjoy each other’s company. “We just go with the flow,” adds Tommy.
Specialist Jack and Jill Children’s Liaison Nurse, Sheila Hayes, who covers East Cork, Waterford, Kilkenny, South Tipperary, says: “Work has been a real challenge over the past few months during Covid, especially working with families who have children at the End of Life stage.
“It has been particularly tough on our families where there are siblings at home on a full- time basis now too.
“As a charity, we do expect families will be requesting home visits over the summer months. A big part of my role at the moment is to support families in their decision to resume their nursing respite hours and to help them adjust to life, living alongside Covid.
“For each individual family, it is about finding the balance and maintaining their own well- being.”
The Jack and Jill Foundation relies on 80% of its funding from corporate sponsorship and the generosity of the public.
“While our fund-raising has been flattened by this virus, our service has not,” says Jack and Jill CEO, Carmel Doyle. “Our families need that Jack and Jill connection now more than ever. So we launched our SOS Appeal to counteract this drop in fundraising, by asking people to donate what they can at community level, knowing they are supporting local families by supporting Jack and Jill.
“At the heart of Jack and Jill is that sense of belonging and community and finding a way to support ordinary families who face extraordinary care needs every day to give them a break.”
info@jack andjill.ie P-phone: 045-844538/660