ALEX’S STORY
May 1993 – Alex born a normal, healthy boy.
1996 – grommets put into ears following hearing problems. Difficulties with toilet training.
1997/98 – continued difficulties with bedwetting and continence at school. Improved throughout the year. Referral to child psychologist with no result. GP reluctant to pursue further. Social and educational skills progressing well.
1999 – good progress at school, socially popular, develops a liking for sport especially football and ju jitsu.
February 2000 – birth of brother. Alex extremely happy.
July 2000 – teacher reports inattentive in class on occasion. Otherwise no worries at school.
Summer holidays 2000 – uncharacteristically naughty behaviour and fighting with friends.
September 2000 – new class teacher concerned about Alex’s hearing.
October 2000 – hearing test at hospital – comes back normal. School still worried as Alex obviously not comprehending what he has heard. Squinting at books. Handwriting getting very bad. Eyesight test – again normal results.
November/December 2000 – referred to community paediatrician. Does several tests. Verdict – needs urgent referral to a neurologist. Meanwhile Alex is constantly getting lost in school, needs assistance to find toilet, cannot be left in playground alone, walking into things, losing things that are right in front of him.
December 2000 – sees paediatric neurologist at Kings College Hospital. Instant referral to Guys Hospital for neurological tests after Christmas.
15 January 2001 – after a happy Christmas go to Guys for tests. By now Alex cannot walk without an adult on each side of him. EEG normal, it’s not epilepsy.
16 January 2001 – MRI scan comes back with adrenoleukodystrophy. Told to go home, give Alex anything he wants and wait for the inevitable.
19 January 2001 – Alex says he feels slightly unwell and then has a massive fit at home. Ambulance called and Alex taken to resus as not making proper respiratory effort.
22 January 2001 – after three days in intensive care Alex wakes up to say he can’t see.
On May 2011 we celebrated Alex’s 18th birthday – big celebrations, huge party, lots of old and new friends
Alex shows his love of Guinness!