Faith was born with no medical problems at all! We started noticing that she was not keeping up with other children her age developmentally by about 6 months of age, which is when our Riley trips began.
First, she had an MRI, which showed there were problems, but gave us no answer about what the cause could have been. For the next year and a half we would make many trips to Riley to see a developmental pediatrician and neurologist in an effort to help Faith and to determine the cause of her problems. Then, two years ago, when Faith was 2, we had a surgery at Riley to put in a feeding tube and do more testing. When the test results came back, it was determined that Faith had a mitochondrial disease, also known as “Mito.” It’s a neuromuscular disease where the mitochondria in the cells fail to produce the energy the cell needs to function properly. It affects every child slightly differently depending on severity.
With Faith, it has affected her ability to walk and talk and function like a normal child should. She can crawl now and pull herself up to stand, but does not walk and has a wheelchair to get around in at school. She does not communicate with words, but definitely communicates to us her needs in other ways. She is a very happy 4 year old who loves music! Her favorite thing to do is to play with her brother! Faith has a long Riley road ahead that will include many more doctor visits and therapies. She is very strong at heart and takes everything in stride.
We appreciate all that Riley has done for us as a family and the support we get at every visit from the doctors to the nursing staff to the lab workers who draw blood for testing. Everyone is so great at Riley!