This boy’s life sentence

Why can’t a country, which reported an Exchequer surplus of €272m recently, look after its most vulnerable, wonders Catherine Shanahan.

I HAVE a nephew called Darren. Like most five-year-olds, he's a stick of dynamite; curious, roguish and lovable all at the same time. He has many blessings a mother and father who adore him, a brother, a nice home, holidays overseas, toys and school friends. He lives near a playground where he meets his other equally fortunate friends every day.

He is happy-go-lucky because life has allowed him to be. One of his greatest blessings, though he does not yet know it, is good health. He has been dealt a good hand.

Last week, I met another Darren.

He too has a mother who adores him, a nice home, playthings.

But in many respects, the hand he was dealt was a cruel one. He cannot enjoy playgrounds, nor can he climb trees, or go abroad for holidays. In fact, he cannot do any of the thousand and one things that should be part of his young life and he can do nothing at all without the help of his loving mother Tessa and his carers, Margo Patterson and Brad Eagles.

The survival of nine-year-old Darren Woods, from Aisling Lawn in Ballincollig, a suburb of Cork city, is dependent on the goodwill of others. He is severely and profoundly physically and mentally disabled, requiring 24-hour care.

Born with spina bifida, by the age of nine months he had intractable epilepsy, resulting in up to 150 seizures a day. In an effort to halt the life-threatening seizures, part of his brain was removed. The procedure cost him his personality.

"Before the operation, apart from the spina bifida, he seemed to be developing normally mentally," Tessa says. "He could say mama, dada, the usual babbling a baby of his age has, he responded to people and was able to drink his bottle unaided."

When you look at the baby photographs of Darren in his Ballincollig home, he looks sturdy and happy and full of mischief and promise, like the average healthy child.

Unfortunately, that baby is nothing like the little boy he became. Today, he looks fragile and confined to a wheelchair, his suffering has left sadness in his pale face. Sometimes the blue eyes seem to show understanding, but mostly, you get the impression of a very handicapped boy for whom life will be a constant struggle.

Just as it has been for Tessa, who has fought tooth-and-nail for every piece of support she has received from the State.

The most recent battle was with the Southern Health Board (SHB) and the State, in an attempt to get extended home support service hours. Prior to her taking proceedings, the SHB had supplied Tessa with 20 hours home support per week.

Through recent proceedings and following a settlement last month, the service was upped to 50 hours a week, just over two full days a week, with a review every six months.

To provide an idea of the level of care Darren's disabilities require, Tessa described a typical day. It takes her an hour-and-a-half to get Darren ready every morning. Early in the morning, Darren's bladder must be drained by a catheter, a sterile procedure performed four times a day, to protect him from serious urinary tract infections. A colonic lavage, a cleansing of the bowels through injection of fluid, to prevent constipation, is carried out a couple of times a week. Tessa, of course, had to learn these procedures.

"When you have to, you learn very quickly and I had to," Tessa says.

Brad Eagles is on hand to help bathe Darren before Tessa brings him downstairs in a stair lift.

The health board didn't supply the stair lift, considering the lift to be too dangerous. The Irish Wheelchair Association (IWA) came to Tessa's rescue with a stair lift donated by a man whose mother had died. Voluntary agencies and individuals have been invaluable.

Embrace, a voluntary organisation promoting the rights of people with disabilities, is run by mothers such as Patricia O'Hanlon, advocate and secretary, and Marie O'Donoghue.

Marie won a landmark case in 1993, forcing the State to recognise her son's right to an appropriate education. Embrace briefed Tessa on her rights and provided financial assistance to fund Darren's home care. Without this support, Darren would have had to remain in institutional care until the case came to court.

Australian Brad Eagles responded to an advertisement Tessa placed, in desperation, after endless delays by the health board in supplying a carer. He has been with Darren and Tessa for more than a year, 24 hours per fortnight, on €11 per hour half the wage he would earn if he was working as an intensive care nurse, for which he is qualified. Embrace pays for Brad's hours.

Margo also replied to an advertisement Tessa placed.

Margo would be happy to work 40 hours under the new agreement, with Brad working the remaining 10. The agreement reached with the SHB allows Tessa to nominate Darren's carers. Tessa has nominated Margo but even though she has all relevant clearance and qualifications, and has worked with Darren for the last nine months, she is still required to go through an interview process to work the extra hours. The Cope Foundation, where Darren attends school daily and spends time in respite care, is carrying out the interviews. Tessa is hoping for a favourable decision by the end of this week.

Tessa ultimately wants to care for Darren at home full-time. Previous attempts, when she had very little back-up, left her in hospital, suffering from exhaustion and chronic back pain. She cannot remember her last decent night's sleep, having spent years sleeping "on the alert" for Darren's seizures.

Tessa needs a fully adapted bungalow and a full-time carer to cater for Darren's needs.

In May 2000, the SHB agreed to provide the necessary aids and appliances. The State asked Tessa to submit a plan, proposing adaptations to her home. The plan was submitted but the State then advised it was not a matter for the Department of Health, but for the Local Authority.

Tessa's demands are not unreasonable. She wants a night nurse. If she had a night nurse and more help during the day, she could have Darren home full-time. The 50 hours the SHB has offered is only the equivalent of two full days of care. She has approximately €400 left out of the €20,000 the State gave her as part of her settlement. She returned €11,000 to Embrace, lent to her to fund her fight, and most of the rest of the money went towards expenses. Her work on a social economy scheme with Westgate Foundation in Ballincollig pays her e140 per week. Unfortunately, due to Government cutbacks on most of these schemes, her position is not guaranteed.

Tessa has not been on a holiday since Darren was born, nor can she afford one. Money will always be to meet Darren's health needs.

"It's like having a newborn baby," she says, "he needs your attention all the time."

In the last fortnight, Tessa has been forced, temporarily, to return Darren to full-time care in Cope due to his worsening health problems, which cannot be dealt with at home. Pain keeps him awake at night and he needs to see a neurologist.

Listening to her, you wonder where it will all end, and why a country which gleefully reported an Exchequer surplus of €272 million in recent weeks, cannot look after its most vulnerable.

You wonder what Tessa's life was like before Darren was born and a photograph in her living room gives a hint. She is dressed in a white beautician's outfit, looking healthy and carefree. Next to her, with his arm around her, is soccer legend George Best.

It was taken in another lifetime.

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