We saw a geneticist at Guy's Hospital on Friday who took a detailed family tree and felt there was enough evidence to make a blood test worth doing on Jordan. Now it must be said that when there is blood to be taken Jordan is usually the one clinging to the light fittings and screaming but between his father and two doctors Jordan had blood taken! He certainly didn't like it but it is for the greater good...
Check the link on the left for more details of the syndrome.
UPDATE: Excellent support group courtesy of FRAXA with thanks to Sally.
