Xavier Downton - Little Fighter

My nephew, Xavier Downton, has been at the Children's Hospital of Eastern Ontario (CHEO) for a number of weeks fighting to recover from a rare condition known as acute transverse spinal myelitis, which is an inflammation of the spinal cord.  Although the exact cause for this terrible condition is not known for certain, possibilities include viral infection, immune system disorder or some other disorder that could cause damage to the myeline (an insulating substance that covers nerve cell fibers). 

Xavier's condition began with unbearable pain and paralysis of practically his entire body, leaving him with only partial mobility in his left hand.  It was determined that his spinal cord was severely inflamed at approximately his neck level.  For weeks he has been resigned to a bed in pain, undergoing tests and procedures in an attempt to reduce the swelling of his spinal cord and determine the exact nature of his condition.  Treatments have been administered, sometimes daily, to work at reversing the possibly irreversible damage that has been done to the nerves that allow him to move and function as a little boy should.  Although  his condition has improved recently, there is still a long road ahead. 

Xavier's initial treatments have included:

Intravenous corticosteroid drugs to decrease swelling and inflammation in his spine and reduce immune system activity.  

Plasma exchange therapy (plasmapheresis) to reduce immune system activity by removing plasma (the fluid in which blood cells and antibodies are suspended) and replacing it with special fluids, thus removing the antibodies and other proteins thought to be causing the inflammatory reaction.

Intravenous immunoglobulin (IVIG) is a treatment thought to reset the immune system.  IVIG is a highly concentrated injection of antibodies pooled from many healthy donors that bind to the antibodies that may cause the disorder and remove them from circulation.

Pain medicines to lessen muscle pain.

Medications to combat viral and bacterial infections.

Long-term, common neurological deficits resulting from transverse myelitis include severe weakness, spasticity, or paralysis/incontinence, and chronic pain.  In some cases these may be permanent.  These deficits can substantially interfere with a person’s ability to carry out everyday activities. 

There is no known cure for this condition and recovery is largely uncertain.  It will take months or even  years of treatment and rehabilitation for Xavier to attempt reversal of the nerve damage sustained and regain control of his tiny body.   

This has had a devastating affect on my family.  My brother and sister-in-law have been at his side the entire way, missing work and sleeping at the hospital.  Extended family and friends have been amazing, providing support and helping out in any way they can.  The physical and emotional toll this has taken on them is impossible to describe.  I'm reaching out to ask for a little help from anyone willing to assist Xavier in his fight to regain his life.  Anything that can be spared will go towards a great cause and help ease the financial burden that his family will endure during the recovery period and very possibly during the long term care that may be required.

Xavier, his family and I thank you from the bottom of our hearts for reading this, and sincerely appreciate any donation you may be willing to provide.


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Brad Downton 
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