Sunday 25 September 2016

Parents coping with a child with disability: 'Isabella could live until she's 10, or longer; we just don't know'

Sam and Francisco Villena's daughter Isabella was born with a severe disability, which results in constant seizures. The four-year-old, who cannot walk or sit unaided, will always need round-the-clock care

Joy Orpen

Published 12/10/2015 | 02:30

Sam Villena with her daughter Isabella. Photo: Dave Conachy
Sam Villena with her daughter Isabella. Photo: Dave Conachy

When parents have a new baby, they are usually called upon to attend to that infant many times in the course of the night, especially in the early months. But what if that went on indefinitely? It's almost unimaginable; but that is what Samantha (Sam) and Francisco Villena have to endure.

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This couple, who are both in their 30s, live in Palmerstown, west Dublin, with their children, Alex (7) and Isabella (4). And while Sam is a Dubliner, Francisco is a Spaniard who grew up in Scotland.

They face enormous challenges in caring for Isabella, who is living with a very rare disease. Sam says there was absolutely no indication anything was wrong, when she had Isabella in the National Maternity Hospital, Holles Street, in February 2011. However, the next day, tests showed that there was fluid on Isabella's brain. Later that night, she had two seizures, and was rushed to Temple Street Children's University Hospital, where she was put on medication for seizures. "We were really terrified," says Sam. "It was all so frightening."

They soon learned that their precious baby was affected by Aicardi syndrome. "It's a very rare, neurological condition that mainly affects girls, and it's completely random," says Sam. "There are about five cases in Ireland." She says life expectancy is limited in people who have the condition. "She could live until she's 10, or longer; we just don't know."

Sam explains that Isabella has a complete agenesis (absence) of the corpus callosum, which connects the two sides of the brain. A symptom of this condition is constant seizures. These can be life-threatening, so constant vigilance is required. And because Isabella's condition is so severe, many other bodily functions are implicated. She has very poor muscle tone, she experiences uncontrolled movements, she will never walk or sit unaided, and she has virtually no vision, although she can sense light and dark. Fortunately, her hearing is excellent, while her spatial sense is good.

Initially, Isabella was fed normally, but at four months, they had to switch to tube feeds, because of the danger of food aspirating (leaking) into her lungs. Isabella has been hospitalised many times in the four years of her life, and she still requires attention, 24 hours a day. "When she's home, we are clock-watching all the time," explains Sam. "She can't miss her meds and she's on a timed feeding regimen. Routine is also very important, so she understands what's going on. And because there is constant seizure activity in her brain, she has great trouble sleeping. So when she was two, we finally agreed to medication to help her sleep a little better."

Some months after Isabella's birth, the Villenas were introduced to the Jack & Jill Children's Foundation. According to CEO Jonathan Irwin, the organisation "provides direct funding to families of children with brain damage, up to the age of four, who suffer severe intellectual and physical developmental delay, enabling the families to purchase home respite care. We also provide end-of-life care to all children up to the age of four years."

Now that Isabella is over four, her hours are funded by the HSE and managed by Jack & Jill. Jonathan says that the Foundation is consulting with the HSE about extending its service to other children up to the age of six.

The Villenas benefit from 80 hours of expert nursing care a month, and there is absolutely no doubt - they really, really appreciate the interventions. "That's 10 nights a month when we actually know we're going to get some sleep," says Sam. "Knowing there is a qualified nurse down there taking care of things means you can go to bed and switch off, and that's just magic.

"Normally I stay up with Isabella until the early hours of the morning, when Francisco takes over, before he goes to his job in the IT industry. Then I get a couple of hours sleep. Right now, he's in Jamaica for work, and we miss him. He's so good with Isabella; he sits and cuddles her and he's great with her meds."

Sam explains that the Jack & Jill Foundation gets less than 20pc of what it needs from government funding, and it relies on donations and fundraising for the rest. "Not only do we get expert care, they can give you professional support when problems arise, and they even act as advocates at times," she says.

Sam says there are many pitfalls to navigate on a daily basis. When she was a year old, even though her condition was very severe, Isabella's medical card was withdrawn. It has since been restored, but Sam says it was an extremely traumatic experience for them, as there are many hidden costs in caring for a child with a severe disability.

"We moved to a new house four months ago, because the one we had couldn't easily be adapted for a child with special needs," Sam explains. "Now, Isabella has her own suite downstairs. She has a sensory corner with a bubble tube, fibre-optic lights and soothing music. She even has a little jacuzzi to help release her tense muscles. She loves her baths; as soon as she gets into the water, she falls asleep."

Sam says they are really grateful to family and friends who helped raise funds to make things more stimulating and comfortable for Isabella. "This has been a life-changing experience for her," she says. And it has certainly affected another life - that of Isabella's big brother, Alex.

"He's just wonderful with her," Sam says. "He rolls about on the floor with her, or he sits while they listen to bedtime stories. She just adores him; they have a lovely bond."

One of the things you first notice about Isabella is her great big smile, and then you hear her shout - very loudly. "Isabella has a gorgeous personality," says her mum. "But it took us a very long time to get there."

As to the constant hollering, Sam says, "I'm very upset if she's crying, but if she's just noisy because she's happy, then I'm really glad to hear that noise."

For more information, or to register for the Up the Hill for Jack & Jill fundraiser, contact the Jack & Jill Children's Foundation, tel: (045) 894-538, or see jackandjill.ie. A €16 donation will fund one hour of home nursing care for a sick child

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