By Alex’s Mum – Sara Hunt, CEO, ALD Life
May 1993 – Alex Hunt born a normal, healthy boy.
1996 – grommets put into ears following hearing problems. We have 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 – Alex makes good progress at school, is socially popular, develops a liking for sport especially football and ju jitsu.
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 which 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 – we see paediatric neurologist at Kings College Hospital. Instant referral to Guys Hospital for neurological tests after Christmas.
15 January 2001 – after a happy Christmas (Alex gets his longed for yellow game boy), go to Guys for tests. By now Alex cannot walk without an adult on each side of him. EEG normal, it’s not epilepsy, we worry it’s a brain tumour.
16 January 2001 – MRI scan comes back with adrenoleukodystrophy. Doctor tells us there’s nothing can be done and we’re 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.
25 January 2001 – told ALD is genetic and we need to have Alex’s brother, Ayden tested. Both boys have tests for adrenal failure. Alex is put on replacement steroids as test comes back positive and it is confirmed his fit was an adrenal crisis. Ayden’s test is negative at this point. Hospital apologises for not informing us of genetics and adrenal side of ALD. They had planned to go through this with us later after we’d had time to get over the initial shock of his diagnosis. We understand.
28 January 2001 – return home and start making plans for future.
February/March 2001 – mobility getting worse. Attending school for a couple of hours twice a week with special assistance. School finding it hard. Alex extremely clingy. Can no longer write and finds it difficult to feed himself. Alex given splints to help his mobility and to keep his feet in the right position. Wearing them at night starts to give him pain. Alex starts to attend a hospice day centre – hates it. We are told to persist.
April 2001 – it is decided Alex can no longer go to school as having difficulty managing stairs. Take boys to Disneyworld, Florida for dream holiday after TV show Bad Girls do fundraiser for us. Alex is still mobile, just, but take a wheelchair. Alex in wheelchair for most of holiday. Speech starting to slur and eating becoming more and more difficult. Wearing nappy at night and can no longer manage splints for more than an hour. Still hates day centre. Ayden diagnosed with adrenoleukodystrophy.
May 2001 – Alex is wheelchair bound now. Posture bad and slumps all the time. Speech near incomprehensible. Needs to be fed now. One leg and arm getting difficult to bend. Fully incontinent now. Still hates day centre.