Adam was born in August 2006 at the Royal Cornwall Hospital in Truro. A 20-week scan had already revealed that he had severe bilateral talipes (club feet). After birth, it was discovered that he had almost no movement in his legs, that both his hips were dislocated and that many of his joints were very stiff and held in awkward positions.
While treatment for his feet and hip conditions continued, tests including a muscle biopsy and MRI scan indicated a neuromuscular condition. His current diagnosis is a rare form of Spinal Muscular Atrophy (SMA) and Arthrogryposis.
UPDATE: 16th May 2017 - A long term genetic study may have identified the root cause of Adam's condition. See Latest News for further details.
In effect, he is unable to bear weight on his legs, meaning he cannot walk, crawl or stand, and cannot sit unaided. He can however roll and pull himself along the floor using his arms. He loves to wriggle into small spaces and tunnels and would spend all day outside if he could. He likes to play on the swing and slide, but due to his condition he has to be fully supported, which makes such play difficult on regular equipment.
He likes to copy his big brother William and play with him on the trampoline. Being unable to stand, he cannot bounce himself but likes to lie on the trampoline while William bounces him up and down, at heights and speeds which horrify his Grandma but which leave Adam laughing and smiling happily – the faster and higher he goes, the more he seems to enjoy it.
Adam is always very keen to travel in the car, and loves to get the keys for Mummy. Indeed, he is fascinated by cars in general, and will happily sit watching Top Gear repeats on Dave, until they start interviewing their special guest, when he loses interest because there are no cars on the screen. He is also a big fan of Balamory and will often attempt to play his Balamory DVDs, no matter what the rest of the family are watching on TV at the time.
Adam’s condition affects his facial muscles which means his speech development is delayed. His speech is however improving regularly, although unfortunately he has picked up a few cheeky phrases from his brother. He has regular speech therapy to help his development. His face is not as expressive as most children his age, although in years to come this may be beneficial if he becomes a professional poker player! To express happiness or excitement he waves his arms up and down – hopefully he’ll learn not to do this when he’s dealt a Full House…
Adam has been subjected to many difficulties in his short life and faces many more challenges in the months and years ahead. He is a placid and good-natured child, but as he gets older he is becoming increasingly aware of his physical limitations which are clearly frustating him. Beneath his easy-going nature there lies an incredible fortitude which continues to amaze and inspire us all.