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The worst symptoms in my opinion are far and wide. Although it is not a death sentence, it can be rough. It is not only hard on the patient but can cause issues within the family itself. A strong will to live and survive is somehow in our DNA. Around the clock care is needed. Extra support from family is another asset.
Medical compliance is key. Some of the medicine has really bad side effects. Like fatigue, breath and body odor, excessive drinking and excessive urination. There are many other symptoms.
Most kids will have a hard time eating. A g-tube may be involved at some time in their young life. There will be many medical appointments for all aspects of the disease. A good strong support system is very important.
Parents will have trouble with giving there kids meds. I know this sound bad but as they grow up things get better.