Hi Marguerite,  It is lovely to hear from you.  We are so lost and lonely without our precious boy.  He was the reason our hearts beat and right now finding the strength to live each day is very hard.  I am so grateful for your help and prayers. This disease is just so awful there is no reason why our wonderful boys had to suffer.  I only hope I can find the strength like you to honour Christopher and make people aware of this disease, and how wonderful he was. 

Christopher was born 18th August 1994 in Scotland.  We came to the USA in 2001, and we were so happy.  California was home to us.  Late December 2003, we started to notice Christopher had nervous tics and problems at school.  We went to a pediatrician, and Christopher was referred to neurologist.  After a hard struggle to convince he needed it, we were told he had tourettes syndrome.  I then went home read about tourettes, and it didn't add up so we had to fight for an MRI and that was when the bottom fell out our world. We were told he had changes and after blood tests was diagnosed with ALD.  I have no family history, and as yet I still have not been tested as a carrier but at that time all I could think off was saving our boy.  He was diagnosed on 18th June 2004 and we were on a plane 7th July 2004 to Durham to the wonderful team at Duke for stem cell transplant, which Christopher had on 3rd September 2004, Unfortunately by late September the disease progressed rapidly and Christopher lost the ability to communicate, eat, talk, walk we were losing our wonderful boy.  Christopher's last wish was to go home to his family in Scotland and Andy and I were determined to make that happen.  He left the transplant unit in November and we looked after him at home until 1st February when with the help of the Make a Wish Foundation we took him home to Scotland.  He was there 5 weeks when he went to Heaven peacefully at home with the 4 of us like he loved listening to Shrek 2 movie. 

There is not an hour passes I don't think of him.  He was an amazing boy.  Everyone who met him loved him he loved life so much and his dog Jiggs was his buddy.  He loved yugioh cards, and his gameboy and ate pizza till it came out his ears.  I miss him so much and cant believe he is gone.  We are trying our best to get on.  We gave up work when he was diagnosed and financially we have survived on charity our work colleagues and family and friends have been amazing and without them we would not be able to live right now.  Our wish would be to bring Christopher's dog Jiggs here to be with us he is with foster family in Durham and we are unable to bring him over I know it would help us a lot to have his dog here he loved him.  We also have nothing here of home all our belongings and personal things are in California we left in such a hurry and when we left Durham we had arranged a shipping agency to take the things but unfortunately they were not a reputable company and we were ripped off and our things were never shipped. Luckily our friends in California tracked the things down and they are safe in storage, we appreciate anything you can do to help us rebuild our life.  ALD attacks the entire family and causes devastation and heartbreak.  Its effect on our family is tragic.  In less than a year our wonderful boy was stricken down and taken from us, and we are left now asking why? 

I hope I am able to talk to you more and thank you again you are like an angel to us. Right now we don't know where to start repairing the devastation.  God bless. 

Monica Keenan