Sara’s story

May 1993 – Alex Hunt 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. Referral to child psychologist with no result. GP reluctant to take concerns 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.

February 2000 – birth of brother, Ayden. Alex extremely happy to be a big brother.

July 2000 – Teacher reports Alex sometimes inattentive in class.

Summer holidays 2000 – Uncharacteristically naughty behaviour from Alex; 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 – Alex has appointment with 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, there is concern it’s a brain tumour.

16 January 2001 – MRI scan comes back with adrenoleukodystrophy. Sara informed there’s nothing that can be done and to go home, give Alex anything he wants and wait for the inevitable.

19 January 2001 – Alex feels unwell, GP called and he has a fit at home. Ambulance called, 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 – Sara is told ALD is genetic and that she and Alex’s brother Ayden needs to be tested. Both boys are tested for adrenal insufficiency – Alex is positive and Ayden negative.

February/March 2001 – Alex’s mobility worsens. 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 but Sara advised to persist.

April 2001 – School decide Alex can no longer attend due to the number of stairs and his safety.

April 2001 – Family go to Disneyworld, Florida for dream holiday thanks to a fundraiser by the TV show Bad Girls. Alex is still walking, just, but is very resistant to using a wheelchair. This changes during the holiday and by the time they return it’s used constantly. 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.

April 2001 – Ayden and Sara are diagnosed with adrenoleukodystrophy.

May 2001 – Alex is wheelchair bound now. Posture bad and slumps all the time. Speech near incomprehensible. Needs to be spoon fed. One leg and arm very difficult to bend. Fully incontinent. Still resistant to hospice day centre.

June 2001 – Major concerns about amount Alex eating and drinking and he’s lost a lot of weight. Gastrostomy (feeding tube into stomach) inserted mid-June. Sara cannot understand Alex at all now. Persistence with day centre starts to pay off – Alex will stay there on his own without crying. He tries to communicate by tapping hand once for yes and twice for no.

July to September 2001 – Family move to more suitable disabled accommodation. Alex extremely uncomfortable most of the time. Muscles constantly tense despite medication. Horrific problems with wind. Family trial different medications, dosages, and other strategies to help symptoms over next two years. Alex starts having laughing fits that sometimes last for hours.

September 2001 – Alex starts special school. Can no longer use his hand to communicate.

October 2001 – Alex contracts pneumonia following chest infection. Three weeks in hospital followed by first respite stay.

November 2001 – Ayden is diagnosed with adrenal insufficiency at 21 months old.

December 2001 – Alex’s spine starts to curve; chest brace fitted.

January to April 2002 – Alex’s laughing fits diminish.

May 2002 – Alex stops smiling.

June 2002 to May 2003 – Continuous problems with muscle spasm, wind and infections. Social services care packages are constantly problematic and family fight for consistent and effective care.

June 2003 – Alex’s ability to make sounds diminishes.

July to November 2003 – Sara continues to experiment with medication and alternative therapies to help Alex feel comfortable.

December 2003 – Alex smiles on Christmas Day.

January 2004 to September 2004 – Family try different ways to encourage Alex to retain function and communicate with some successes. Alex begins eating soft foods again, uses an exercise bike, makes more sounds and is blinking to indicate yes and no.

September 2004 – Alex starts secondary school.

April 2005 – Alex comes home from school with a broken femur and is in traction for six weeks. Sara decides to home educate.

November 2006 – Following a SENDIST tribunal local authority agree to fund home education (18 months after initial request).

April 2008 – Ayden’s MRI scan shows the start of ALD deterioration.

May 2008 – Ayden admitted to hospital for urgent bone marrow transplant.

June 2008 – Alex develops chronic spinal curvature and pressure sores and is mostly confined to bed. Corrective spinal surgery is advised, but this can’t be done until his pressure soles have healed.

September 2008 – Ayden returns home after successful transplant and extended period in hospital following transplant complications.

September 2008 to March 2009 – Ayden mostly confined to the house and home-schooled due to infection risks.

April 2009 – Ayden well enough to return to school.

September 2009 – Alex has successful corrective spinal surgery.

July to October 2010 – Family life returns to “normal” with a well deserved holiday and the addition of a dog.

May 2011 – Alex’s 18th birthday – transition to adult services traumatic and care package nearly lost.

September 2011 – Ayden starts secondary school.

May 2012 – Family take a cruise and Alex has his 19^th birthday on Madeira.

September 2012 – Alex’s care package is cut and all nursing care removed.

December 19th 2012 – After contracting Norovirus, Alex passes away in his sleep at home.