case study: Angelman syndrome

What is Angelman syndrome?

Angelman syndrome is a complex genetic disorder that primarily affects the nervous system. Characteristic features of this condition include delayed development, intellectual disability, severe speech impairment, and problems with movement and balance (ataxia). Most affected children also have recurrent seizures (epilepsy) and a small head size (microcephaly). Delayed development becomes noticeable by the age of 6 to 12 months, and other common signs and symptoms usually appear in early childhood.
Children with Angelman syndrome typically have a happy, excitable demeanor with frequent smiling, laughter, and hand-flapping movements. Hyperactivity, a short attention span, and a fascination with water are common. Most affected children also have difficulty sleeping and need less sleep than usual.
With age, people with Angelman syndrome become less excitable, and the sleeping problems tend to improve. However, affected individuals continue to have intellectual disability, severe speech impairment, and seizures throughout their lives. Adults with Angelman syndrome have distinctive facial features that may be described as “coarse.” Other common features include unusually fair skin with light-colored hair and an abnormal side-to-side curvature of the spine (scoliosis).
source: Genetics Home Reference

Tom Baker

Tom Baker was an 8 year old boy with Angelman Syndrome. Bob Griffin’s Carer Control system design was a milestone in the physiotherapy, social interaction and was the beginning of safe outdoor cycling for people with learning difficulties. It gave birth to this innovative company.

Tom had a much disrupted sleep pattern, which was exhausting for his mother (Bob’s partner). She said, “If only I could tire him out, he would sleep and so could I.”

Tom loved to ride his old trike, but  like all other trikes at that time, it only offered a push pull rod as a means of parental control. As Tom had no idea about steering or braking that meant walking backwards if Anne was to keep an eye on him, and that was clearly impractical for any distance.

Bob, being an engineer, modified the old trike so that it had a dynamic control arm at the rear. That meant that by moving the arm to left and right, the trike steered left and right.

Tom’s very first ride was a round trip of 3.5 miles. Not bad for a boy with Angelman Syndrome who could only walk about 300 yards. Needless to say Tom slept like a log that night and a simple idea was turned into one of those rare inventions with the power to change lives.Angelman Syndrome

Tom’s Carer Control began the Tomcat brand. Tomcat’s greatest assets over the years was the friendship that grew between an engineer and a little boy with learning difficulties. There’s nothing like living with special needs to truly understand special needs – and no gives better customer feedback than Tom’s mum!

To illustrates that perfectly: Bob saw no point in having the handlebars turn when Anne steered the trike because – with typical engineer’s logic – why move them if Tom would never learn to steer?

‘You don’t know that,’ was the sharp reply. ‘He’ll never learn if you have your way, so don’t you dare fix those handlebars’. Well, Tom did at least learn how to steer into puddles. Fixed handlebars were only ever offered as a special after that. No one can accuse Bob Griffin of being a slow learner!