RAISING children is a battle in itself, but when your child is severely poorly, that battle starts to take its toll.
For little Leo Carolan, his family’s love for him has taken them through the most difficult times of their lives.
The one-year-old from Horwich was born with Noonan syndrome, a genetic disorder which an estimated one in 1,000 to 2,500 children are born with, and left him needing round-the-clock care.
Parents Sam and Danny’s world has been completely turned upside down since his birth as they fight through sleep deprivation and endless hospital trips in the battle to get their little boy well.
But thankfully their journey has been eased with the help of Bolton-based charity Lagan’s Foundation, which provides home respite and support services for young children with heart defects or feeding issues across the UK.
To help promote the importance of charity’s work, the couple have now spoken about their experience.
For Sam, aged 36, Leo’s condition meant giving up a job as an energy analysts to make sure her son had the care he needed.
She said: “I am not going to lie, it was the worst time of my life.
“Once we were discharged from hospital, the support service was not there to accommodate families like us.
“We felt alone and isolated and didn’t even have time to research what help was out there.
“At one point we were feeding him every hour and every couple of hours.
“It is scary, I can’t work, I’m literally just his full-time carer.
“Going from being a working mum to this has been hard.
“He is the bravest little boy I know, he has been through so much and I would swap places with him if I could.”
Leo was born six weeks prematurely on Christmas Day, 2015, at the Royal Bolton Hospital.
There was no indication in the run-up to his birth that there was anything wrong with Sam and Danny’s third child and first-born son.
But he was not breathing following the birth and spent nine days in intensive care and underwent a blood transfusion.
His parents were then told his size — weighing just four lb and 14oz — and features indicated there was something wrong, with tests later revealing he had Noonan syndrome, a genetic disorder that can cause a wide range of health problems including restricted growth and heart defects.
On top of this, it was found Leo has three holes in his heart, enlarge liver and he also battled sepsis.
Sam explained: “Those were touch-and-go days, I didn’t think he would get home from hospital.
“When they told us there was something wrong, we were just in shock, there had never been any indication he had any genetic problems.”
Leo spent time in specialist care before coming home six weeks later.
However, his family’s struggles were only just beginning.
Continuing health problems meant constant trips to hospital.
Unable to feed properly, he had to be fed through a tube in his nose but struggled to keep the food down.
While they did get an occasional visit by a neonatal nurse, the onus fell on Sam and Danny — who also have two daughters aged five and two-and-a-half —had to take turns staying up over night to make sure their son would eat.
His hatred of the feeding tube and regular vomiting meant Leo struggled to put on any weight, weighing just seven lb at six-months of age.
Danny, aged 37, said: “When he is bigger and stronger he can develop more, but he’s not getting bigger and stronger. It’s a catch-22.
“When I look back now, I see how bad it was.
“If you accidentally fell asleep and miss a couple of feeds, you would have to play catch-up and that was difficult on us and Leo.
“It was all we thought about day and night, it put massive strain on us as a couple and on our girls.”
However, the couple eventually found some light when they heard about Lagan’s Foundation.
The charity was launched by Carren Bell following the death of her four-month-old daughter in 2011 and it was Carren who came to the family’s aid.
She helped push for an operation for Leo to have the feeding tube fitted to his stomach, which not only helps his feeding but also gives him more freedom to play and learn.
She also set them on the road to getting a carers allowance and even stepped in to help care for Leo when they needed a rest.
As the charity has grown over the past year, it has funded a trained volunteer to make regular visits, not only helping with Leo, but even reading his sister’s bedtime stories when their parents are taking care of their brother.
The support has proved invaluable to the couple in the continued fight to get Leo on the road to a better and brighter future.
Sam added: “We still have some way to go, he is nearly 15 months old now and still wears three to four-month-olds clothes.
“We try not to think about what the future will hold. Lagan’s made such an impact on us all.
“Carren was the first person I met who really understood what I was going through, we just clicked straight away.
“When things get better with Leo I will definitely become a volunteer myself.”
Lagan’s continues to seek volunteers and anyone who can help with its work and fundraising.
To find out more contact 01204 468300 or visitlagans.org.uk.