Supreme effort to gain ordinary life
Dec 26 2007 by Jane Hall, The Journal
Earlier this year, The Journal told the moving story of Scott Nugent, who suffers from the same rare degenerative brain disease that killed both his mother and his baby son. He was pinning his hopes on expensive and controversial stem cell treatment to give him extra time with his family. Journal readers raised much of the cash that enabled Scott to fly to China for the care in the summer. Jane Hall finds out what’s happened since – and what the future holds for Scott.
TWELVE months ago 2007 was shaping up to be one of the worst of Scott Nugent’s life.
As others prepared for Christmas and looked forward to a new beginning as the nation rang out the old year and welcomed in the new, 2007 opened up before Scott like a yawning chasm. And he was standing right on the edge ready to tumble in.
His mother was dying of a degenerative brain disease – the same inherited condition that cruelly took the life of his eight-month-old son Oliver and will one day claim Scott.
He should have been looking forward to the festivities with his wife Louise and young son George. But unable to walk unaided and with his sight, co-ordination and speech deteriorating, at 34 he found himself having to face up to his own mortality as his nerve endings stopped functioning and his body slowly shut down.
Worried about what the future held for his family and desperate to be there for George as he grew up, Scott confronted the New Year not with hope, but with a deep-seated fear.
The only gift he wanted for Christmas was to stave off the inevitable to spend a few more precious years with his family.
Twelve months on and things couldn’t be more different. Scott’s body is still being ravaged by the rare neurological condition spinocerebellar ataxia, but thanks to controversial stem cell treatment he put himself through in China in the summer, he believes he has now been granted his wish to see George grow up.
And with 2008 only days away, the now 35-year-old is in high spirits. “I never thought 12 months ago I would be in this position. It all started in about March when I became aware of the stem cell treatment. At the beginning of last year I had no hope and no idea that any of this was going to happen. Now I feel much more positive.” Scott flew to China last July after family, friends and Journal readers raised £36,000 to help pay for the stem cell procedure, which is banned in the UK, America and Europe.
But the technique, which involves injecting stem cells from the umbilical cords of healthy full-term babies into the bloodstream and base of the skull, has had some success in China in easing symptoms for ataxia victims.
Scott saw an immediate improvement in both his walking and handwriting, and was able to send Louise a four-page letter on their 10th wedding anniversary. “I was doing laps of the hospital and walking everywhere,” Scott says. Unfortunately, once he was home in Whitley Bay, North Tyneside, the effects wore off and Scott is once again unable to write or walk unaided.
However, his speech, eyesight, co-ordination and energy have improved significantly. And while there is no way of measuring if extra years have been added to his already diminished life expectancy, Scott believes he will be seeing in many more new years.
Sitting in his red-painted living room, a decorated Christmas tree standing in the window and Louise at his side, Scott says: “There is an improvement in me, but sadly not across the board. It’s not as great as I had hoped for. But I do feel I have given myself extra years.
“Obviously, there is no way of saying what my life expectancy was before I had the treatment, but I believe that by doing this I have given myself longer.
“That’s all I wanted, to be able to see George grow up. People who have never had to live with something like this don’t understand how desperate you become. I was desperate, really desperate – I still am. I am scared to leave George early; he is our reason for living.
“There is no cure for my condition and the stem cell treatment was the only hope I had. A lot of experts, doctors and friends didn’t think the treatment would work at all, and it has had some effect. I used to have to use a magnifying glass to read and now I don’t need to, and my co-ordination is definitely better. I’m much steadier holding a drink, and a friend who came around the other day to help us put up some flat-pack furniture said he could tell I was steadier and more energised.
“I don’t see the fact that the treatment hasn’t worked across the board as a failure. Unfortunately, I think my particular strain of the disease – type 7 – is a particularly virulent one. Perhaps if I had known about this treatment a couple of years ago, the results might have been better.
“But deep down I believe I have given myself extra time. I was willing to try anything, to go all the way to China on a whim and a hope, and I do believe it has paid off. I just want to be here for as long as I can be for Louise and George.”
Having watched one son die, Scott’s desperation is easy to understand. Oliver was one of only a handful of children worldwide born with full-blown ataxia. Scott began to display the symptoms of the disease that has ravaged his family when he was 24. But the Nugents, who married in August 1997, decided to try for a baby after being reassured by medical experts that while there was a 50/50 chance of the condition being passed on, a cure would probably be available by the time ataxia took hold of any child.
Oliver was born in January 2003, but at six months was diagnosed with infantile spinocerebellar ataxia. He died on September 22 that year. As the couple struggled to come to terms with Oliver’s death, Scott’s own condition worsened.
Deep down Scott, a former software engineer who learned his craft at Vickers in Scotswood, Newcastle, says he always knew there was something wrong with him.
His maternal grandmother Lena Wright and uncle Alan Wright all developed spinocerebellar ataxia. His own mother June eventually succumbed last May, aged 58.
There is evidence that generations of Scott’s family have suffered from it. But because scientists pinpointed the faulty gene only in 1996, the condition had been misdiagnosed as either motor neurone disease or Parkinson’s.
Scott describes spinocerebellar ataxia as a genetic spelling mistake that gets bigger and bigger as it passes down the generations. “Years back, the spelling mistake was a lot smaller, so people weren’t getting shaky until they were in their 80s.” What is undisputed is that the condition is now manifesting itself earlier.
Three-year-old George is thankfully free from the rogue gene that killed his brother and that will one day claim the life of his father. That’s because he was conceived with donor sperm.
Despite Scott’s deteriorating health, Louise, 37, says they never considered not having another child. “When Oliver died we knew the only thing that would help would be to have another child. Not to replace Oliver, but we just loved being parents. And Scott wasn’t as bad then. He was still walking around.”
To George there is nothing different about his dad. “He copes very well,” Louise says. “He knows there is something wrong with his dad, but he helps him as much as he can. He is a really caring and kind boy.”
Has she seen an improvement in her husband? “It’s hard for me because I’ve never had a problem with his speech as I’m with him all the time, but I do think he is talking better. I have to take his word for it that his eyesight has improved.”
Scott interjects: “But the main aim was always to get me longer to live, and I believe that has happened. But life expectancy is a funny thing as I could go out and get run over by a bus. You never know what is around the corner.”
Just as Scott’s year has turned out better than expected, so has Louise’s.
The primary school teacher who gave up work to tend her husband has utilised her care experience to launch her own business, At Your Side, specialising in looking after elderly people and those with neurological disorders. She is looking forward to the many challenges she knows will come her way in 2008.
In the meantime, the Nugents are preparing for Christmas – and aim to make it the best one yet for George. “Neither of us are very Christmassy people, but with having George and after what we have been through this year we are going to make it extra special with lots of presents and time spent with the family,” Louise says.
“In the New Year I am going to concentrate on the business, getting on with our lives and trying not to think of the future too much.
“This really has been one heck of a year, but a lot of positivity has come out of it,” she adds, taking hold of Scott’s hand.
“The fundraising has brought all our family and friends together and we have realised that there are people who care. That has really surprised and touched us.”
