My grandson is a mischievous little fellow, with a wacky sense of humour, red hair and gorgeous blue eyes like his daddy AND he has Moebius Syndrome.

Dylan was born in November 2005 in New Zealand. Our nation has a population of just under four million, so chances are there are only three others in this country with Moebius. We call him our one in a million baby!

When he was born it was noticed he had trouble suckling and in spite of the best attempts by his lovely mum and the nursing staff, by ten days old, he was still being fed via a nasal-gastric tube. No one knew what was wrong. I guess in a country of this size, the medical expertise isn’t what it is in say, America. His paediatrician called in a colleague who had just come back from some overseas training and asked him to look at this baby. This man flicked the bottom of his foot to make him cry and immediately made the diagnosis of Moebius Syndrome, due to the lack of suckling ability and expressionless face upon crying.

Dylan also presented with other tell-tale signs from birth, namely, a concave chest wall, club feet, strabismus (crossed eyes) and a weak upper body.

Upon diagnosis, the hospital staff gave his mum a haberman feeder and he was sent home to join his brother and dad. In the ensuing months and years Dylan has had two surgeries on his eyes to straighten them more, and surgery on his feet. When he was just a couple of months old he was put into plaster casts for several months to give the joints a head start before surgery.

He was very susceptible to respiratory infections and at one time I was very scared he was going to leave us. When he was about nine months old, he spent ten days in intensive care with a particularly nasty infection. But he’s proven himself to be a fighter.

When he was about two, after another serious chest infection, he came home from hospital with a CPAP machine which he had to wear each night when asleep. It was a machine that blew air down his airway, to keep it opened enough for his body to get enough oxygen. They called it an ‘air splint’. Dylan decided when he’d had enough of this machine, by pulling it off one night and refusing to wear it again. He was right. He’s been free from nasty infections ever since.

About two months after his fourth birthday Dylan took his first independent steps without his walker or crutches and has been doing it ever since. His mum sent us a DVD of him walking before I could get to see him and it brought a tear to my eyes. He’s just so confident! His family went to a wedding just after he began walking and he was the star on the dance floor!!

Besides being the ultimate independence for Dylan, it is also saving his mum an awful lot of back pain. We are all so proud of our Dylan!