DYLAN Gaffney Hayes is essentially an eight-year-old multimillionaire who lives in a house with automated sliding doors and his own playground and a space-age bathroom. He will even shortly have his own gym.
But if this makes him sound fabulously privileged, know this: He will never have an imagination, the greatest gift of childhood, because brain injury at birth killed his short-term memory and so the power to imagine escapes him. He lives always in the here and now.
Unlike other kids, he has no capacity to make the banal fantastical and that, perhaps, is his greatest tragedy.
His parents, Thomas Hayes and Jean Gaffney, fought the Health Service Executive (HSE) for five years until it finally admitted liability for the brain injury and agreed to a settlement, but not without putting the family through the wringer and without the good grace to apologise.
When the €8.5m settlement was eventually reached on November 29, 2013, Thomas and Jean said it would enable them to “now set about buying a suitable house for Dylan and avail of all the therapies he so desperately needs to improve the quality of his life”.
The thing about cases like Dylan’s is we read about the settlement in the newspapers, but we rarely follow up to see how effective these millions are in improving the quality of life for the children, which is the motivation behind this article.
I visited Dylan, who has cerebral palsy, and his parents in January 2014, shortly after the settlement was reached, to hear the finer details of their five-year legal battle. I paid a return visit last month to see if the money had started to the make the difference his parents so desperately wished for.
So what, so far, has the money done?
For a start, it has allowed Thomas and Jean purchase a far more suitable house than the one they were living in when I first visited.
At the time, they were in a modest three-bed two-storey semi-detached house in Kilcohan Park outside Waterford City, a house they described during the legal battle as “very confined” and “totally unsuitable for Dylan, who has to mobilise with a wheelchair from time to time”.
The hall was too narrow to accommodate a wheelchair. The bathroom was at the top of a steep narrow stairs. There was no downstairs toilet, meaning Dylan, aged six-and-a-half, was restricted to using a potty, which he found embarrassing — as any six-and-a-half-year-old would. There was nothing about the house in Kilcohan Park that made it suitable for someone with Dylan’s level of disability.
I met Dylan that afternoon in 2014 when he came home from school. He was wearing a Second Skin [a special corset] to keep his body rigid. He was ‘furniture walking’, which is what babies do to support themselves when trying to stay upright.
Last month, on my second visit to the family, to see what it is that money can buy for a child who can never have a normal life, I found them in leafy Leoville, in a beautifully redesigned bungalow on the Dunmore Road in Waterford, where the space and openness is a far cry from a grey, cramped housing estate.
Homes in Leoville are set a respectable distance apart and all are individually designed one-offs. There are automated gates at the end of the drive, at the top of which is parked a van to transport Dylan and his wheelchair.
To the left of the front garden is a playground, designed with the input of a physiotherapist. It has a slide and a climbing wall and a swing and a basket swing.
“We thought putting in the ordinary swing would be a waste of time, that he would never manage it, but he is getting the hang of it now,” Jean says.
The swing is good for building up his trunk muscle, but the climbing wall he finds very hard. And although climbing may be out of reach for the moment, the most startling development since my last visit is that Dylan can walk. Yes. Unaided. This is a major breakthrough since our first meeting.
His parents will never forget the first time because it was on his 7th birthday, July 22, 2014. I witness Dylan walking without a Second Skin and without a walking frame and without anything to lean on. The amount of ground he can cover is not huge, but the fact remains that he can now walk unaided.
This is where the benefits of having money to pay for essential therapy kicks in. His settlement has enabled his parents to pay for private physio sessions, at a cost of €60 a pop, with obvious benefits.
Money has also allowed the kind of fit-out, that, in an ideal world, every disabled person’s home would have. Doors slide back automatically in all the rooms, from Dylan’s bedroom through to the main living quarters.
Corridors can easily take a wheelchair. Oversize handles on the patio doors allow Dylan to manage where smaller handles might present a problem because of poor fine motor skills. Low-level shelves in a pantry are easily accessible. The kitchen is striking for its lack of wall cabinets — all units are at ground level for Dylan to access, including microwave and toaster.
His bedroom, which opens on to an as-yet unfurnished gym, has plenty room for a wheelchair. It has a phone, a camera, and an alarm for Dylan’s safety. There are joists to support a hoist buried beneath the plaster in the ceiling if the day comes when hoists are required.
His en suite is a space-age bathroom, housing a specialised toilet that can wash and dry him, allowing him the kind of privacy most of us take for granted. Dylan’s privacy came with a price tag of €3,800. There are automatic taps at the sink and towel rails positioned for balance. The shower includes a dryer. The floor surface is non-slip and heating is underfloor.
“I know the toilet was expensive, but it’s worth its weight in gold,” Thomas says. “I used to carry him downstairs after having a bath when we were in Kilcohan. Now he can walk from bathroom to bedroom by himself. It’s improved quality of life for all of us,” Thomas says.
The house cost them €360,000, the upgrade another €425,000. The playground cost €20,000. None of it is over the top. Dylan is already reaping the benefits, in terms of both quality of life and promoting independent living.
“We’d a long time to think about the house,” Jean says. “We wanted a house built for purely practical reasons. We wanted his bedroom close to the living area. A closet he could access to hang his coat when he comes in. Simple things. Cupboards he could reach. And then the location. This came up, and it was just perfect.”
There are shops nearby — Aldi and Lidl — and a couple of wheelchair-accessible pubs that serve food. Dylan, when he gets older, will be able to make his own way down the lane to the shops. That would have been unthinkable in Kilcohan.
At the end of Leoville is a green where Dylan can go with his labrador, Hunter, sourced from Cork-based charity Dogs for the Disabled. Hunter, when fully trained, will carry out a range of practical tasks such as picking up dropped items, emptying the washing machine, sending for help, or even helping a child with severe walking difficulties to walk with greater ease and balance.
Back in the house, Thomas shows me the nurse’s quarters: A bedroom and bathroom to accommodate a nurse when the day comes that Jean and himself, both troubled by arthritis, need more help caring for Dylan.
He walks me through the patio doors leading from Dylan’s bedroom into an enclosed yard with a trampoline. Thomas and Jean are hoping it will ultimately house a 12m x 4m swimming pool, which is about to enter the planning stage.
Dylan is enrolled in a Halliwick swimming programme geared towards people with physical disabilities.
“He is gone from having a tight left shoulder to being able to do 36 overarm strokes in the pool,” says Thomas. “Swimming is his favourite pastime.”
“Dylan is most at home in the pool, his body is not fighting the water and it’s wonderful exercise for him,” says Jean. Halliwick swimming costs €49 for every two lessons.
The pool will cost €160,000 and has been approved by the ward of court. Thomas says the ward of court has been very understanding and has not really refused anything once they explain why a particular item is required and submit quotes for work planned and receipts for work done.
Thomas says every penny has to be and is accounted for. There is no sense of ‘splashing the cash’. The money is tightly controlled by the ward of court to see Dylan through life as comfortably as possible and in a manner that allows him to reach his full potential.
“People think we have €8.5m sitting in a bank account,” says Thomas. “We don’t. We must apply for and account for every penny we spend. An actuary worked out what was required for Dylan down to a T.”
The house is missing features we have come to associate with disability, such as ramps and handrails.
“We were thinking about what we wanted for five years,” says Thomas. “By the time the legal battle was over and it came to talking to the architect, we knew exactly what we wanted. And I didn’t want it to be a disability house. We didn’t want ramps or handrails. We wanted it to be a normal house for when Dylan’s friends come around.”
Dylan has a rather cool attachment for his wheelchair. “We’ve had kids around who say ‘I want one of those for Christmas’,” Thomas says.
It’s a Batec, a powered handcycle invented by a man from Barcelona, Pau Bach, who went from able-bodied to quadraplegic in a split second after his spine was injured in an accident. The Batec, which cost €5,250, and is attached to a manual wheelchair, can travel at 25km per hour in top gear. Dylan gives me a demo. It gives him independence and enjoyment.
I’m toting up in my head the money spent so far and while there’s still a fair few million to play with, I can see how quickly the bills add up — the ongoing and expensive cost of various therapies, the extra tuition vital to Dylan’s schooling.
I’ve already mentioned the swimming and the physio. There’s also the play therapist who visits every Thursday (€45 a session), and the special needs assistant (SNA) who takes him a couple of times a week.
She had been his SNA in school until she was laid off, but with the money they got in court, Thomas and Jean were able to hire her themselves. Dylan also requires speech and language therapy. During the summer, he got extra tuition to prepare him for moving up a class after the holidays. The tutor cost €25 an hour and was a regular visitor to Dylan’s home over the summer.
There are additional therapies he has travelled for — to the Sunshine Clinic in Kilkenny, for occupational and sensory integration therapy at a cost of €500 for six sessions; to Templemore for physiotherapy at a cost of €300 a month.
On top of the substantial weekly outlay, a significant ball of money must be set aside for Dylan’s future. There will come a time when he will require two fulltime carers.
Provision must be made for a psychologist when he reaches his teens. He will need practical help around the house when Thomas and Jean are no longer in a position to assist, such as a gardener, a cleaner, a driver. The €8.5m still has a very long way to go.
What really irritates Thomas and Jean is when people say things like: “Did you ever see yourselves living in a house like this?”
“The answer is I’d love to be in it if I’d won the Lotto,” Thomas says. “I lived in Kilcohan for 30 years [Thomas has children from a previous relationship] and everyone could run up and down the stairs and I was happy out.”
It gets to him, too, when people say: “Dylan is doing so good now.” And yes, he is, which is something Thomas and Jean celebrate but, as Thomas points out, he’d be doing a lot better if he hadn’t been injured at birth.
“I’m in the playground and I see other children running about and I think to myself: ‘That’s how good he could have been. He could have been just one of those kids running around a playground’,” says Thomas.