Lanarkshire schoolgirl Nicola Fleming yesterday put on her best dress and went to a party.
The five-year-old, who suffers seizures daily, was at the launch in Edinburgh of a unique Scottish medical facility.
Nicola, from Hamilton, is one of the 1 in 8000 people who suffer from Tuberous Sclerosis, a little-known multi-system genetic disorder which primarily affects the brain, kidneys, and skin.
Less commonly, the genetic condition means a child can inherit TS from one of the parents or it can arise as a new mutation hits the lungs and gastro-intestinal tract.
There is a one in two chance of sufferers passing TS on to their children, and there is often a difference in severity between an affected parent and TS child.
Scotland's first ''specialist multi-disciplinary clinic'' for sufferers, both children and adults, was officially launched at the Western General Hospital by Mr Eric Clarke, Labour MP for Midlothian. It is sponsored by the Tuberous Sclerosis Association in partnership with the hospital's NHS Trust.
The clinic team, led by consultant clinical geneticists Dr Mary Porteous and Dr David Fitzpatrick, also includes a TS genetic nurse, Ms Diane Stirling, whose role includes travelling throughout Scotland after a patient has attended the clinic to discuss treatment with their GP.
Nicola's parents, Alice and Donald Fleming, both 39, spoke of the shock at learning of their daughter's illness when she was about 15 months, as she became prone to swaying when sitting down and her grandmother, who recognised the seizure symptoms that Donald suffered as a child, advised that she be examined by doctors.
She underwent scans and was treated at Yorkhill Hospital, Glasgow, and was diagnosed as having TS. The family also discovered Donald's condition, which he had previously thought to be epilepsy.
''I hadn't a clue what TS was all about when we were told,'' said Mrs Fleming who, with her husband, has to deal with their daughter's seizures, sometimes up to 10 daily, sleeplessness, and co-ordination problems.
''We have had a lot of problems with seizure control,'' she said. ''We are hoping she will be referred here. At the moment its trial and error with drugs.''
Research into the condition has so far failed to find a cure, but there have been breakthroughs, with two genes being shown to be responsible.
Mr Stephen Stirk, chairman of the Tuberous Sclerosis Association, told the launch ceremony the clinic would play a vital role and Scotland was at the forefront of the development of the management of the condition.
Mr Clarke described it as a milestone and said everybody prayed science would eradicate the faulty genes that caused so much suffering.
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