At last, they can give Sean a cuddle      

By Craig Robertson IT isn’t easy being Sean Beauregard. He was born with two broken legs, a broken collar bone and multiple swollen blood vessels round his neck. His parents were told he had three days to live.  He did survive, but suffered 16 fractures in the first year of his life. It quickly became apparent that not only did he have brittle bone disease, but also hydrocephaly, an abnormal swelling of the head because of excess fluid from the spine.

Kevin and Sara Beauregard, with Sean,  Kirsty and Sumo the cat.

The swelling causes pressure on the brain which shrinks while the head grows to accommodate the extra fluid. It’s a truly terrible condition. Sean is now eight — an age many doubted he would reach — but he’s just half the size of his little sister, four-year-old Kirsty. He is largely confined to lying flat on his adapted wheelchair-bed, can’t lift or control his head and can’t speak properly. Yet despite his hardships he’s a fighter and his mum and dad, Sara and Kevin, wouldn’t be without him. “He’s a bright wee soul and he’s had some lovely times,” says Sara in their home in Balerno, near Edinburgh. “He’s a darling.” With a laugh she quickly adds he can be a right wee so-and-so as well. Sean may have to lie back, but that doesn’t mean he has to take life lying down. He’s a strong-willed boy who knows how to get what he wants. Still angry Sara told me he’d been awkward just the day before and she was still angry with him. The local Pentland Flower Club had raised £2000 for Rachel House and asked Sean along to receive the cheque on behalf of CHAS.  He responded by throwing away the cheque in a tantrum every time they tried to present it to him! He would rather have been home watching his Postman Pat video and made sure everyone knew it. Everyone and thought he was cute but Sara wasn’t so impressed. He got a telly ban for his bad behaviour. Sara and Kevin know they can’t give in to Sean’s every demand for the telly to be switched on or for a drink or a biscuit any more than they would with sister Kirsty. “It is hard to say no to him,” admits Sara. Then she laughs. “Not just because we love him, but because he has an amazing capacity to go on and on and on till he wears you down!  But like any other parents we have to try to instil discipline and try to make him understand no means no. Even if it is usually a losing battle.” Letting Kevin and Sara know what he wants isn’t easy for Sean and it clearly frustrates him. His vocal cords work fine, but he can only make a stab at words in the way a baby can. He can pick up what his mum and dad are saying, but it’s painful to watch him strain to communicate in return. “It’s so difficult for him,” agrees Kevin. “He’s eight now and understands so much but can’t speak for himself. When he was small he said ‘umbrella’, such a difficult word, but now he can say very little.” Instead, Sean might roll his eyes at the TV or say ‘Pat’ the best he can. Neglected Family life for Kevin and Sara is far from easy. It’s about making sure Kirsty isn’t neglected, even though life has to revolve around Sean. It means dealing with the practical things, like specially-adapted clothes, so Sean can be dressed without hurting him.  It’s about breaks at Rachel House rather than holidays.  Rachel House is an enormous help. It allows Sara, Kevin and Kirsty the chance to get a break from their usual routine and that makes such a difference. The hospice is probably even more important for families like the Beauregards than for the children themselves. They can relax, read, sleep late, pop out for a meal or a drink, whatever takes their fancy. All secure in the knowledge that Sean is getting the best of care. Kevin and Sara would never describe looking after Sean as a chore, but it is obviously very hard work. Rachel House provides vital respite when they need it most. Just knowing it is there and available helps ease the strain. “Rachel House is so important for us,” agrees Sara. “I get a rest when I need it most and Kirsty absolutely loves it there. The campaign to build and fund the new hospice is vital and everyone should do what they can to support it.” Dad Kevin is a soft-spoken American from Massachusetts, a former policeman who now crafts classic furniture in the attic of their converted mill. It’s a hobby-turned-business, which has the huge advantage of allowing him to be near Sean when needed. The couple met when Sara was working in the States. She is a psychiatric nurse by training and worked with special needs kids in the past, a background which has helped with the practical side of looking after Sean, but which can never fully prepare you for it happening to a child of your own. “It was devastating when we were told Sean had three days to live,” remembers Kevin. “But we dealt with that hour by hour and now we cope day by day. Hurt him “One of the worst things in those first few days was not being able to pick him up and cuddle him. We knew we soon might not be able to — yet also knew we could hurt him. That was a problem for years and so hard to take.” That’s now less of a problem because of new treatments which have increased Sean’s bone density. “It’s really improved his quality of life,” says Sara. “He’s largely pain-free now, whereas before he was in constant pain. He’s had only a few fractures this year, once when the cat jumped up on him, once when he twisted his leg and broke it and just last week when he broke his finger. It might sound a lot but it is so much better.” It also now allows Sara and Kevin the luxury that so many parents take for granted, being able to pick up their son and cuddle him. It’s something they clearly treasure. Yes, it’s not easy being Sean Beauregard. But being part of a happy family where everyone is geared to his needs makes life that bit easier.

You can e-mail us at: hospice@sundaypost.com