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Diagnosed with hereditary spastic paraperesis and progressive leukodystrophy.
Hi, my 5 year old son has been awaiting diagnosed for 2 years, after every test imaginable he's been diagnosed with hereditary spastic paraperesis and progressive leukodystrophy. He was fine when born, then started falling A lot around 18months old and regressing with speech and movement ect. He now requires an occasional wheelchair and has an intentional tremor, he needs thickener in he's drinks, regular physio and needs a protective helmet as he falls a lot, he's arms and legs are very stiff. I wanted to know if anyone knows of anyone who has both of these conditions and the outcome/prognoses. I spoke to the doctor on the phone who told me about the test results, didn't tell me what gene ect, and he said the prognoses isn't good and to wait until we see him, I'm waiting to see him in two weeks. Any info would be appreciated xx