About Me: Female, 38, runcorn, United Kingdom, member since Jan 2008
i have a 13 yr old daughter who has a rare syndrome called goldberg and sphrintzen and she has over the yrs had many other problems which may or may not be related.we have just found she has centronuclear myopathy,
basically my journey has been tryin to get over losin my daughter at four yrs old.which at a young 22 year old was hard enough i had a 2 year old to think about and she ke...
if i put goldberg blah blah no one knows,its been with me for such a long time and ye know wat?not me,my daughter,an she is an angel,she has goldberg and shprintzen syndro...
i would just like to say,when i first became a memeber on this site,i didnt understand the concept of it as i was constantly looking for information and answers in every m...