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Little princess who is living with MS
She is their little princess, a girly girl who loves dressing up, playing with her Disney princesses, colouring in and adores "squishes" kisses and cuddles from her family.
What you would never guess is that five-year-old Lucy Wood is one of the youngest – if not the youngest person – in Britain to be diagnosed with Multiple Sclerosis, the progressively disabling neurological condition.
That bombshell diagnosis – her mother, Sharon, 39, likens it to a "head-on car crash" – came just a few days after Lucy's fifth birthday, last August.
Sharon says: "We already had a pretty good idea of what was wrong with Lucy but having it confirmed was horrific. It was the worst feeling I have ever experienced. It was absolutely terrible."
Hearing that Lucy had MS like her dad, Stuart, 40, left the Peterlee couple inconsolable.
"It was far worse even than Stuart's diagnosis. It hit Stuart really terrible for weeks and he just broke down all the time," said Sharon. "He completely blamed himself. He never wished it on himself and he would never wish it on one of his girls.
"At first I was very strong. Lucy has never been frightened. She has been amazing. I have been there for her and the strong mam and when Stuart picked himself up after a few months. Then it hit me like a brick wall. I was an absolute mess but counselling helped."
Today Sharon is positively looking to the future and believes in time a cure will be found. That's why she is committed, like all their family and friends, to raising funds for the MS Society.
And there wasn't a dry eye in the house when Lucy and her dad took to the catwalk at The Sage, Gateshead, for the MS My Style fashion show last Friday.
Thousands saw the little girl and her dad cheering them on and clapping as they brought the fashion show to an emotional finale.
Lucy and Stuart modelled with other MS sufferers, including Janice Richardson from Millfield, Sunderland.
It is the first time MS Life, the MS Society's flagship lifestyle event, has been held in the region instead of Manchester. All the proceeds went to the MS society and the two-day event was a resounding hit in raising awareness.
Stuart, who was diagnosed with the disease at 27, is an estate manager for East Durham Homes, and is on the drug Rebif, which has slowed the condition's progress.
But his fine motor skills – the skills you need for writing – are deteriorating and he struggles to walk a few hundred yards. Both he and Lucy are on the same strength of daily injections and have relapsing/ remitting MS.
Before Lucy's birth it was his drug regimen, rather than MS, that Stuart feared might have affected his unborn child.
"When they put this little baby in my arms and I could see she was perfect I broke down," he recalls.
Like older sister, Katie, 12, Lucy initially thrived. But, at 18 months, as she spoke her first words, she developed a stammer.
"For a while she had speech therapy," says Sharon.
We were told that she was a bright girl racing to get her words out and as her speech improved her stammer would disappear. But now I wonder if that was the first sign something was wrong."
Then in June 2007, when Lucy was nearly four, disaster struck after she developed conjunctivitis.
"I realised her eye affected with conjunctivitis wasn't responding to anything," says Sharon.
"In a panic I covered her right eye and asked what she could see. She said 'all black, Mammy'."
Sharon immediately took Lucy to an optician who explained there was pressure building at the back of her left eye and referred her to Sunderland Eye Infirmary.
After a CT scan came back clear, Lucy was transferred to Newcastle General where doctors carried out a lumbar puncture, blood tests and an MRI scan.
"A few days later the paediatric neurologist explained they suspected Lucy had Acute Disseminated Encephalomyelitis (ADEM)," says Sharon. "We'd never heard of it but were just relieved it wasn't life threatening."
ADEM is an auto-immune disorder which is more common in children. Like MS, it attacks the myelin sheaths that surround and protect the nerves.
Without this protection, the nerves, which are the crucial pathways along which the brain sends messages out to the body, start to deteriorate. This can lead to MS symptoms such as clumsiness, lack of motor skills, or even blindness.
However unlike MS, ADEM is usually temporary. In 80 per cent of cases the child will only suffer one attack and few long-term side effects.
"Lucy was put on a high dose of steroids and miraculously, within hours, her sight was back," says Sharon.
But six weeks later, as Lucy played with her toys, Sharon noticed that Lucy was blind, this time in her right eye.
"My heart hit my boots," says Sharon. "We had been told ADEM was unlikely to reoccur but it seemed Lucy was one of the unlucky ones."
After a third attack, when she collapsed at Dene House Primary school and began vomiting,
Sharon and Stuart began to fear the worst. Sharon accompanied Lucy in the ambulance.
"I thought I was going to lose her. The left side of her face was twisting as if she was suffering a massive stroke and she was unable to swallow and was virtually paralysed."
Back at Newcastle General, Lucy received high doses of steroids and again her condition improved. But an MRI scan picked up scarring on Lucy's brain called lesions, which occur when there is nerve damage and can indicate MS.
"Lucy's blindness in one eye and slurred speech all seemed identical to Stuart's early MS symptoms," says Sharon. "Deep down I think we knew.
"We did ask if Lucy had MS, but the neurologist felt unable to make that diagnosis after just a couple of episodes. He later told us he needed absolute proof before giving such a life-changing verdict."
It was only after the fourth attack that Lucy was finally diagnosed. "It was her birthday party and she had a princess party with her friends.
"When everyone left Lucy lay down on the kitchen floor exhausted, but then couldn't get up," says Sharon. "When she began vomiting I knew. I thought 'this is MS'.
"Two days later, Lucy started dragging her left leg, just as her father had done before he was diagnosed.
"I felt sick," says Sharon. "This time, her neurologist confirmed MS. We were inconsolable; it just seemed so cruel."
Research shows that having a parent with MS increases your likelihood of getting the disease from one in 800 to one in 40.
As Dr Evangeline Wassmer, a paediatric neurologist at Birmingham Children's Hospital, explains: "If your parent has MS you have a predisposition, but it's still fairly unlikely you'll get it.
"There are many other possible causes such as lack of vitamin D, smoking and the hygiene theory, where people are just too clean.'
The concern for children with the disease is that it is not diagnosed early enough. About 85,000 Britons suffer from MS and research shows that in 10 per cent of cases, the onset occurs before the age of 16.
However, most of these children go undiagnosed until adulthood and the symptoms such as clumsiness and tiredness are simply put down to growing pains.
"One of the problems is that some health professionals are not aware that MS can affect children," says Dr Wassmer, who is leading an MS Society research project into the disease in UK children.
This is why the MS Society has just launched a campaign to raise awareness of MS in young people, with Lucy featuring in the nationwide advertising campaign.
Stuart says: "Rationally I know it isn't my fault. But that hasn't stopped the guilt – I am the one who has passed this disease on to my beautiful little girl.'
There are two main types of MS. Lucy has the relapsing/remitting type which affects about 65 per cent of sufferers.
These patients have episodes of symptoms, followed by periods of normality. Most will eventually develop secondary progressive, when symptoms are constant and deteriorating.
This is similar to the other form of MS, which is known as primary progressive. Here there are no periods of respite.
On her bad days, Lucy suffers from slurred speech and blurred sight, and has to use a buggy for trips out for her "lazy legs".
Otherwise she is like any normal child, apart from tiring easily and occasionally dragging her left leg.
Sharon gives Lucy her daily injections and says: "She is such a brave girl, she never complains."
Because there is so little research into children's MS, it is difficult to work out a definitive prognosis for Lucy.
However experts believe she will experience significant neurological deterioration before her 21st birthday.
Sharon says: "Who knows what the future may hold. We have been unlucky. But we are a strong and loving family. We have a lot to be thankful for.
"There could easily be a new drug or even a cure for MS. I do believe it will come. There is a cure. It's just a matter of finding it."
For more information, visit www.mssociety.org.uk
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Friday 10 February 2012
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