18.7K
CHIn the beginning, it wasn’t obvious to anyone that Rosie was sick. She was diagnosed as gross-motor delayed and physical therapists worked with her to improve the strength and stamina required to catch up with her peers. This was all considered fairly normal. Her progress in PT was slow, but evident. She started walking the stairs holding onto the spindles instead of crawling. She learned to kneel and squatted to pick up toys with ease. Still, the nagging feeling that something was wrong grew stronger. In the mornings when she woke up, she seemed so weak. As her communication improved, she began to convey that she was experiencing pain with increasing frequency. There were days when she refused to walk at all. When she was 2.5, we were encouraged by a savvy PT to push for bloodwork and a consult with neurology - just in case. #mldawareness #MLD #metachromaticleukodystrophy
@cheering4rosie
