I have a friend in the UK, her son also has duchenne. he's older than finny, so they have a lot more to worry about right now than we do. she recently wrote that they got some alarming news about his heart, and for those of you that don't know, heart conditions with DMD boys tend to be the reason they don't live as long as they could... so any mention of a heart condition or problem definitely freaks a DMD parent out.
anyway, im trying to write something encouraging to her, I tell her that shes doing the best that she can for her son and that's all you can do... and literally, that's ALL you can do. theres nothing else. I wanted to write 'itll get better soon,' 'keep up the faith and things will start to look up,' but you cant say any of that to a DMD parent, because things will not get better soon, and they wont start to look up. in fact, things will only get worse. as a parent of a child with duchenne, you will watch your child deteriorate right before your eyes and there is NOTHING you can do about it.
this isn't a 'pity me' post. this is a request. if youre reading this, you know us or you know someone else with duchenne and you stumbled upon my blog with its hundreds of duchenne related tags. Either way, im pretty sure you are connected to DMD in some way.
my request is this: tell someone today about duchenne. you can show them this video parent project muscular dystrophy vid or you can send them to my blog, or just tell them that there is a rare fatal disease out there taking the lives of young boys and theres still no cure. we need more awareness. we need a cure.
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