Ramsi's Story

Ramsi ReedRamsi Alex Reed was born a beautiful little girl on September 12, 2006. We took home a seemingly healthy baby and were thrilled to experience life as parents.

A few months into this precious baby’s life something just didn’t seem right. Ramsi wasn’t as alert as she first seemed and as time went on we continued to notice other things. She would not put any weight on her legs, and although she rolled over and could sit up, at the time most babies should, she never crawled. Around this time a move to salt lake meant a new doctor and the support of being close to family again. Finally we had the help and concern we were in need of.

After months of many visits to the doctor and closely watching Ramsi a decision was made to get some tests done. During all of this and shortly after her 1st birthday, she began going to physical and occupational therapy to help with her speech and strength. There they thought that she was a little behind but would catch up. Even still, things did not progress as they should have so we took the next step.

Ramsi was 19 months when she first saw the neurologist up at primary children’s. it was right away that he suggested seeing a specialist. At this point ramsi was being tested in every way. She had an mri, an ekg, many blood tests, and finally a muscle biopsy. The muscle biopsy is what revealed the most to them and is what led them in the direction of Mitochondrial disease. She is challenged with her strength, which makes it hard for her to keep up with others her age, but Her biggest frustration is being unable to communicate back. She can understand what others say to her but cannot put into words exactly what she wants to say. None of this stops her from being the little spitfire that she is. She is very determined to do what she wants, and will laugh and dance the whole way through, and most times forgetting she is challenged at all.

To this day, more testing is being done to find out exactly what type of Mitochondrial disorder Ramsi has. For now she is simply loving life. She is brave and happy and has the biggest most beautiful eyes you’ve ever seen. She brings joy to all who know her and we will all continue to fight right along with her. We are full of hope and have faith that she will grace us with her presence and keep us laughing for many years to come....