Family of boy with cerebral palsy say they’d ‘be lost without’ Jack and Jill nurse

Five-year-old Richard Doyle is one of just 150 children in the world born with a rare disease which impacts him both physically and developmentally.

Mum Ciara says discovering that Jack and Jill provides nursing support hours to children like Richard made a huge difference to her family. It means she and husband Richie know their little boy is receiving the best care in the family home, allowing them to spend time with big sis Isabelle (8) who dotes on her little brother.

“They’re actually amazing,” says Ciara. “We’d be so lost without Julie, our Jack and Jill nurse — she cares for Richard, but she really minds all of us. She makes sure I’m alright. She’d randomly texts me on a normal day. She’d ask if there was anything she could do? It actually gives us time to have a bit of time with Isabelle. I’m a diabetic, if I have an appointment, Julie’s always there.

“Some days it could be simple tasks, just to go to Tesco and be able to run around. We’re very grateful for their services. We would be lost without them.”

Having first been diagnosed with cerebral palsy, Richard has since been diagnosed with conditions including dystonia and DYNC1H1. It means that the five-year-old’s needs are complex.

“We always got told he had cerebral palsy, level four in all four limbs. And then Richard started rolling around and bum shuffling a bit,” says Ciara. “They did different blood tests on him and he actually has this rare genetic disorder that only 150 people in the world have. He has a condition called DYNC1H1. It can affect your whole body.”

The family first began to wonder if something was wrong when they noticed Richard was having feeding problems as a baby.

“He was two weeks early, and he was 11lbs 3ozs,” recalls Ciara. “He was a whopper, but he could never suck a bottle. They thought it was reflux. But I swear it took over two hours to get an ounce of milk into the baby. Richard physically wasn’t drinking. I couldn’t get my head around it.”

In those early months, she says, it felt like she was bringing him to the doctor on a weekly basis. “In December, he got bronchiolitis. It wasn’t bad, but because he wasn’t drinking, I thought: I have to bring him into Crumlin.”

During an examination, doctors noticed that one of Richard’s legs was fractionally shorter than the other. It prompted a series of events that led to their little boy’s original diagnosis.

“All of a sudden, our world got turned upside down,” says Ciara, who lives with her family in Ballybrack in Dublin. “We didn’t know what was going on. We were told he’d need a carer and he’d be a wheelchair user. This is obviously hard to take in, and we were trying our best.”

As they learned more about Richard’s condition, the family found “an amazing” pre-school for their boy called Kildarton.

It was here that she first learned about Jack and Jill, which provides in-home nursing care for children like Richard.

“I was really apprehensive to have someone else looking after him,” explains Ciara. “He is really attached to me and I was worried about how having someone else in our home would work for us.”

Thankfully, their nurse is now very much a part of the family dynamic. “She is all of our best friends,” says Ciara. “The support is just amazing and she is so accommodating to our needs and is always helping me plan ahead for the times I might need her.”

This week the family had an eagerly awaited visit to Santa’s Magical Cabin, which this year has donated Santa visits to Jack and Jill families at its six locations nationwide.

“We are so happy to be going to visit Santa’s Magical Cabin in The Ilac Centre, as Richard is due to go back into hospital a few days after our visit for an operation on his hips. He needs to get screws which were fitted two years ago replaced. This is something that will have to be done every two years as he continues to grow.”

“It’s a great opportunity to make some lovely memories for Isabelle and Richard, and then hopefully all will go to plan regarding his operation and we can all be home together for Christmas as a family.

“It’s a great opportunity to make some lovely memories for Isabelle and Richard, and then hopefully all will go to plan regarding his operation and we can all be home together for Christmas as a family.

“He was actually a really special Santa. He was so nice, and he knew Richard was having his operation, so he wished us well and told us he’d be looking after us.”

In 2023, Jack and Jill supported 534 families across Ireland with in-home nursing care and respite support. Today, there are 416 families under their care, and 3,040 families have been supported by Jack and Jill since it was founded 1997.

For further information about the work the charity does and how you can support it, log on to jackandjill.ie