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Death usually results within five years after the onset of clinical symptoms

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14y ago

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Metachromatic leukodystrophy Katie is almost 5 and had this sense age 2 the other night her pluse ox drooped to 70 and heart rate to 40 is her time getting near?

HI - Dean from the MLD Foundation here. Clearly a call to 911 or your emergency services is the first action at a pulse ox of 70 or such a slow heart rate. While MLD does affect the entire metabolism, and Katie's age is of concern for a late infantile onset, it could be that many other things that can be treated should be looked at by a professional. Meaning that MLD creates problems for children that often can be treated even though their systems are compromised.


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How many children die from metachromatic leukodystrophy?

Question with more than one answer: 1. All of them, since there is no cure. In singular cases, disease progression has been slowed by a hematopoetic stem cell transplant (HSCT). In the rare case that a child is known to have MLD before symptoms show (IE if a sibling has been diagnosed with MLD before), a HSCT has prevented symptoms to appear. 2. None, since cause of death is not by MLD itself, but by related illnesses, such as infections, pneumonia, metabolism and general pain issues.


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