Cherysh Dawn Smith blessed us with her presence on 11/30/2012.
Right away she had trouble feeding and gaining weight was a constant struggle. When she was 4 months old she began using an ng tube and was diagnosed with MECP2 Duplication Syndrome. Around 9 months she graduated to a g-tube. Around 13 months she was diagnosed with seizures. Everyday is a blessing with her but it's also a struggle. She began crawling around a year old n just started walking about 6 months ago. A few months ago we finally were able to remove her g tube but now her weight is an ongoing battle. She is just now getting over pneumonia that developed from a cold which is pretty normal due to her immune system.
Mecp2 is a devastating disorder and Cherysh has most of the symptoms and it's an everyday battle. While she learned to crawl and walk at some point she may regress and no longer be able to do those things and with her immune system so low eventually she may get too sick and her seizures could get much worse.
There are so many fears we hold in our hearts because we know that this disorder can be deadly. We could not imagine our life without Cherysh. Cherysh can't talk but her smile says it all and I don't even want to think about the day when she can't smile anymore.
Every little bit helps so please join us in the fight to end this devastating disorder and save our MECP2 babies.