“I ran The London Marathon for ALEX TLC in memory of my boy JJ.
JJ was diagnosed with cerebral Adrenoleukodystrophy (ALD) at 6 years old, ALD is a progressive and life limiting neurological condition. After being a happy and healthy boy our world shattered when JJ and his little brother was diagnosed with this condition at 6 and half years old & 18 months.
ALD is rare genetic disorder that mainly affects the white matter of the central nervous system (ie the brain or spinal cord) which results in healthy boys to loose their abilities to walk, talk, speak, hearing, eye sight etc.
JJ went from a healthy boy to loosing all his abilities and become under pallative care.
JJ passed away and gained his angel wings in March 2023 at 14 years old.”
