Our lit­tle girl needs 24-hour care

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

Sunday Independent (Ireland) - Life - - NEWS -

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.

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.”

‘Ai­cardi syn­drome is a very rare, neu­ro­log­i­cal con­di­tion that mainly af­fects girls, and it’s com­pletely ran­dom’

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

Sam Villena with her daugh­ter Is­abella

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