SAMANTHA Villena's old life – her happy, normal life – ended one spring morning two years ago. Several days earlier she had given birth to her baby daughter Isabella.
The pregnancy was difficult so the newborn was closely monitored. Doctors noticed fluid on the child's brain and sent her to Temple Street Hospital, Dublin, for tests. There, she had her first seizure. The spasms didn't last long. But they changed everything.
"They gave us the news when Isabella was less than a week old," says Samantha. "You think you've got a healthy baby. And then you find out it isn't the case"
Isabella was diagnosed with the extremely rare Aicardi Syndrome.
Occurring mainly in girls, it is a genetic malformation that, in Isabella's case, means she is blind, has impaired physical development and experiences seizures on an almost daily basis. She will never be able to crawl, walk or feed herself and her sight is limited to recognising light and dark.
As it impairs Isabella's immune system, the condition is also life limiting. Samantha knows her little girl's span here is extremely finite. For the time they do have together, she is determined to lavish upon her all the love she can.
"There is no cure," says Samantha (36) from Cherry Orchard in Dublin. "We don't know how long we are going to have her for. A chest infection could turn into pneumonia – something like that might happen. You have to live day by day, week by week. You have to be happy when she is healthy, when things are going well."
Samantha is a pragmatic sort and, eventually, the disbelief wore off, the pain eased to a dull throb. Together with her husband Francisco and six-year-old son Alex she wants to give her daughter the best possible life.
"The diagnosis was an absolute shock," she says. "We were hoping to complete our happy family. We were all delighted that Isabella was on the way. Then your world is turned upside down – you are introduced to a new world you don't know anything about. It's terrifying. Ultimately life has to go on. My husband had to go back to work. I was at home with two very young children and then the seizures would start."
She didn't know where to turn. Her family was eager to assist but Isabella requires specialist attention, so there were limits as to how helpful they could be. Early on, Samantha had been offered the services of the Jack and Jill Foundation, which provides nursing support for parents with sick children, including home nursing visits and care, advice and bereavement counseling.
On average the foundation funds 64 hours of home nursing help per child per month, at a total cost to the organisation of €3m annually.
Samantha was inclined to say thanks but no thanks. She'd given up her job in the travel industry to care for Isabella. She was a resourceful person. Surely she could cope. Before long she had cause to reconsider. Isabella needed to be looked after on a 24-hour basis.
Regardless of how committed, no one person could do that.
"Initially we were very naive," she says. "We were offered Jack and Jill and thought we didn't need it. At the start it was hard having a stranger in the house. Actually, they have been so fantastic. If you are worried Isabella is sick, a nurse can come and give her opinion.
'We can't leave her with a family member. Isabella is tube fed and is on a great deal of medication. Plus, she has a lot of seizures. You couldn't expect a family member to look after her – it would be very scary for them were something to happen. They wouldn't know what would be the best thing to do."
The family had never heard of Aicardi Syndrome, which is characterised by the absence from the brain of the corpus callosum, a bundle of nerves that connects the left and right sides of the brain.
Nine out of 10 cases are girls and the condition is extremely rare – there are thought to be less than a thousand cases worldwide. The Villena family are aware of just two others in Ireland.
Caring for Isabella has brought Samantha and Francisco, a computer programmer born in Spain, closer. Initially, though, it put their relationship under pressure.
"At the start you do fall apart. There were a lot of sleepless nights.
"Isabella was having seizures on the hour every hour. It does break you. Then it brings you close together. It makes you work harder as a couple and as a family to make everything as normal as you can."
"You can keep being upset about missing out on the life you thought you would have. Or you can try and enjoy the life you are living and make as many special memories as you can. If you spend all your time being upset about the hand you are dealt, everything will pass you by.
"Isabella was in hospital a lot the first year. That took its toll. As she started to be at home more, things became increasingly normal. At moments you think 'this isn't so bad'."
Still, there is always a reminder that they aren't like other families. "Something happens and you remember 'no, she will never be able to do the things that other kids can'.
"You get to meet a lot of others in a similar situation and you become friends. And then they lose their children. Inside, you breathe a sigh of relief and think 'Thank god we still have her for now'."
Jack and Jill's nursing services allow Samantha to live, if not a normal life, then a bearable one. The support is crucial for her emotional and psychological well being she is convinced.
"If I need to leave the house or take Isabella's brother somewhere I can do so with total piece of mind. Realistically you could say they gave us a life.
"Otherwise we couldn't socialise. It is a huge thing to take on. These are the people who give us our occasional breaks."
Rather than be angry at the world, having Isabella has made Samantha a kinder person. She is less inclined to lose her patience with strangers. Things that would have annoyed her in the past now strike her as trivial.
"When your life is mapped out around the clock, as it is now for me, you do appreciate those moments of freedom. And you become more sympathetic towards people.
"In the past, I would have been giving out about stupid things. Say, you experienced bad service in a shop or restaurant. That used to annoy me. Now, I think: 'Ah, it's fine. They're probably having a bad day. I'm sure they are busy.'
"Having a sick child changes your view of life. It changes your view of everything."