Help us to help them

Daughter’s illness has tested couple’s faith to the limit

We’d have cracked up without Rachel House

By Craig Robertson
PATRICK and Pamela Smith can never forget a few short months in 1989. It was a time that changed their family’s lives for ever.
They were on holiday in Lossiemouth when Patrick noticed their six-year-old daughter Felicity sitting with her nose pressed right up against the TV screen. She told her mum and dad it was the only way she could see the programme.
Worried, the Smiths took Felicity to an eye hospital and she was referred to a neurosurgeon at Yorkhill in Glasgow for further tests.
While waiting for the results, things became even more traumatic. The Glasgow couple had two grown-up children — Nick a student in Coventry and Fiona who was at Dundee University.
On the same Thursday night Nick was knocked off his motorbike shattering a leg, asthma-sufferer Fiona came home ill from university after taking a severe reaction to an aspirin.
Just two days later, she was dead.
A few weeks later, still deeply distressed, Patrick and Pamela were given Felicity’s diagnosis.
“It was much more than an eye problem,” remembers Patrick. “We were told she had Batten’s Disease, she would quickly lose her sight, then progressively deteriorate. Her life expectancy was somewhere between 16 and 30 years.
Hellish


Above — Patrick and Pamela Smith.
below — Felicity pictured at her brother Nick’s wedding.
“We were completely floored. I’d never heard of Batten’s, but the diagnosis was hellish. We couldn’t take everything in. We got so much support from family and friends, but we could easily have gone under.
“We didn’t ask or read up about Batten’s, we just couldn’t cope with that. So when Felicity had her first epileptic-type seizure we were completely taken by surprise.”
Felicity’s sight had gone by the time she was eight and life became ever more difficult. She went to a series of schools, some of them unable or unwilling to accommodate her needs. One headmaster even suggested sending her to a school for the deaf.
Too busy
“Her friends began to drift away,” says Patrick. “They weren’t being mean, they were too busy to play with her. They had ballet or skating or any number of things Felicity couldn’t do.
“Her memory began to go, she started to lose her balance and would become confused. She was trying so hard, but it was increasingly difficult for her. By the time she was in her teens, Felicity was in a wheelchair, her speech had become repetitive and she tired very easily.
Thankfully, help was at hand.
“It was Yorkhill who suggested Rachel House and Felicity began visiting there in 1999, usually for three nights at a time, occasionally for a week,” says Pamela. “Quite simply, one of us would have cracked up by now without Rachel House.
“Felicity enjoyed it so much and for us it meant a lot just to know it was there. Even if we were going in six weeks time it took some pressure off, knowing respite lay ahead.”
Until December, the Smiths cared for Felicity at home when she wasn’t at school and, subsequently, John Wheatley College in Glasgow.
Patrick was grateful Glasgow University, where he is a maths professor, allowed him to work flexible hours to spend as much time with her as he could.
However, just before Christmas, things reached breaking point. Pamela could no longer physically cope with looking after Felicity at home. At 20 she had grown too heavy to lift and became more uncooperative as she became tired and frustrated with her condition.
Safety valve
“Essentially, I just cracked up one Saturday morning,” admits Pamela. “I had already booked two emergency respite stays at Rachel House, but it wasn’t enough.
“It had got to the stage where I was phoning Rachel House at 3 am as a safety valve because I needed someone to talk to. They were unfailingly warm and responsive.
“Felicity is now in Mavisbank Nursing Home, Bishopbriggs, near Glasgow. There is simply no suitable residential option for young adults in Scotland. Mavisbank is an ordinary care home and Felicity is with old people, many of them struggling mentally.
“We should have looked for somewhere earlier, but kept thinking we could care for her, kept putting off the inevitable. I feel so guilty even now for not being able to look after her. I will feel guilty for the rest of my life.”
The Smiths are angry at the lack of residential care for young people in Scotland, apart from the respite available at Rachel House and soon at Robin House.
They are well-educated, financially secure and not afraid to push for support. They wonder too, if they are finding it so difficult to find somewhere suitable for their daughter, how are people with fewer resources supposed to cope?
Either Patrick or Pamela visits Felicity every day, together when they can. Patrick plays the dice game Yahtzee with her, they read together and Felicity loves art.
The Smiths clearly love Felicity very much, but their ability to cope has been stretched beyond reasonable demands. Their comfort comes through their Christian faith.
“Our faith isn’t an insurance policy or a ready remedy. It’s a channel for enabling,” explains Pamela. “Faith transforms your view of your situation, it doesn’t necessarily make it easier, but it makes it more bearable.”
Dream
If any family has had their faith tested it’s the Smiths. Patrick remembers, as if anyone could forget, the words of his daughter one morning, aged six, before the dire effects of her condition set in. “I had a dream last night that I was in a wheelchair. What do you think that means?”
A question, surely, that no parent should have to answer and a situation no child should have to suffer.

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