Joshua ‘JJ’ Luckasavitch – aged 13

Symptoms experienced:

• Inability to walk
• Memory problems
• Extreme fatigue
• Jaundice

JJ had food allergies and asthma all his life. He contracted pneumonia and missed school from November 2006 – January 2007. He tried to return to school after the Christmas holidays, however thirteen year old JJ felt unwell and on his way home his legs suddenly buckled and he collapsed. For eight long months, JJ was in and out of Hospital but there were no answers found. He was referred to a liver specialist, who failed to diagnose his condition. At one point it was thought that JJ was suffering from Wilson’s Disease a genetic disorder in which copper accumulates in tissues. .

JJ became increasingly jaundiced and lost his ability to walk and write. He was referred to a liver specialist, who failed to diagnose JJ’s condition. He was told he might never walk again. His paediatrician worried that JJ’s organs were shutting down. He was getting weaker, felt really sick and was exhausted. The whites of his eyes were now yellow and he had short term memory problems. He couldn’t keep food down and all he did was sleep.

Finally in August of 2007 JJ was referred to a haematologist who found that this was a case of pernicious anaemia and when he was tested for B12 he had a record serum level of zero. He was also low in other vitamins including vitamin D.

JJ went undiagnosed for so long that the tissue in his spinal cord which carries nerve impulses was also seriously damaged. This condition (SACD) Subacute Combined Degeneration of the spinal cord is secondary to pernicious anaemia. He also has multiple fractures and osteoporosis in his back.

JJ’s mother Kelly, knows that a simple test of his B12 level would have diagnosed his problem months before and would have prevented some of his nerve damage. She is dedicated to raising awareness of this condition so that others do not have to endure the same distressing experience. You can see JJ’s story in this documentary.