When Alex Connerty was born in April 2005, weighing just 2lbs 10z, the doctor exclaimed: "Wow, he's small." His mother, Sue, remembers seeing a massive mop of black hair before he was whisked to the special care unit. "I thought there was something different about him straight away," she says. "It sounds awful, but I didn't want to get too close to him because I feared he wouldn't make it."
After 12 months of health problems, Alex was finally diagnosed with "primordial dwarfism". He is the only person in the UK with the condition - and only 58 people in the world with it. Unlike in other forms of dwarfism, his limbs are in proportion to the rest of his body, but very small. It is likely Alex will die prematurely without expert intervention, and so the family, from Maghull, Merseyside, want to send Alex to the US to see Dr Charles Scott, the world's leading expert on dwarfism, at a hospital in Delaware. The family are raising funds for the trip, which is likely to cost £5,000. They have called it the Walking With Giants campaign because everyone will always seem like a giant to Alex.
"We have got photographs of Alex on our website which were taken eight months ago and he is still wearing the same clothes," says Sue. "When he reaches adulthood, he is only likely to be around 2ft 10ins."
Through the Little People America website, the family has been in contact with other people with primordial dwarfism around the world. One family in Iran had a daughter with the condition, but the six-year-old died last year from an aneurysm. It is hoped that if Alex is able to have annual MRI scans then doctors will be able to prevent the same thing happening to Alex. Other complications he could face include poor eyesight, spinal curvature and dental abnormalities.
In fact, Alex has been in and out of hospital since he was born. Sue and her husband, John, say their older children, Jess, nine and Michael, 12, are "fiercely protective of Alex - they call him their little action man".
"There have been lots of times where we have just had bad news after bad news," says Sue. "Once John whispered to him: 'Alex, you can go up with the angels. You don't have to fight no more.' I get upset just thinking about that."
