Excerpt from a talk on the history and growth of Williams Syndrome Support
Groups. Given by Kit Crawford to the NZWSA National Camp at Paraperaumu in January 1999.
The mystery of Dr. J.C.P. Williams after whom the syndrome is named, is still unsolved.
Dr. Williams was the Registrar at Greenlane Hospital in Auckland, New Zealand when he
noticed that a number of children coming in for heart surgery (many of them with
supravalvular aortic stenosis) shared other features in common with each other.
They had similar facial features - they were chatty and outgoing - rather undersized and
appeared to suffer from varying degrees of mental retardation. He wondered if there could
be a syndrome involved.
He spoke to the cardiac consultants, his Chiefs at the time, and was given the go ahead to
conduct further investigations and a paper on the subject was printed in Medical journals
in 1961. Families still living in New Zealand who were involved in his research report Dr.
Williams as being a very charming and gentle man.
Dr Williams worked at Greenlane until 1964 when he was offered a job at the Mayo Clinic in
the USA. This position was kept open for him, but as he never showed up it was given to
someone else.
Dr. Williams then went to London to work, but when the Mayo Clinic offered him another
post he again failed to appear.
He then disappeared, and his family didn't know of his whereabouts except that a suitcase
was left in a luggage office in London which was never claimed.
His mother died in 1972 and Interpol traced him to Salzburg.
His sister lived in Rotorua, New Zealand until she died in 1988. Her son Tom Morgan never
met his uncle.
Sir George and Lady Cooper from the UK Williams Syndrome Association paid a visit to Dr.
Williams nephew, Tom when they were in NZ in 1990, but he was unable to shed any further
light on his whereabouts.
The Coopers also rang Sir Brian Barrat-Boye and Dr. Lowe whose names also appear on the
original paper in 1961, but neither knew of any further news.
When I rang Dr. Lowe after the Coopers had requested that I try to find out more about Dr.
Williams, Dr. Lowe remarked "He was a brilliant eccentric!!"
By now Dr. Williams would be in his early 70's - is he still alive?! One wonders???..!
"
