Help make a difference.
I just want to know if anyone else out there has mitochondrial myopathy. I feel like everyone is so different and I would just like to find someone who has something closer to what my 6 year old daughter has.
Sorry it's been a while I keep so busy. We have had the mitochondrial myopathy diagnosis for a while but just went to a specialist who slapped us with all these overwhelming paperwork and websites and I am so confused. I am printing everything and anything on her condition. We just had genetic testing done and her and I both show a POLG2 gene mutation variant (whatever that means). She looks normal her "invisible disease". I just made a power point for her teachers for next year. She will be in 1st grade. I am so worried at school getting harder from all the reading I have done. She doesn't eat much at all. She is 6 and about 37 pounds. She has always been that way and now that tagged her as "failure to thrive". I hate that phrase, it sounds like no one cares. She is getting ready to have an extra tooth pulled that is sideways in her maxillae and I am worried about sedation but it will prevent future problems if we remove it now. Everything I read says its progressive but can it stay the way it is now....stable...or am I just waiting. A question I have for the doctor next visit. If you know anything let me know.