#littlestwarriorwednesday Meet Oaklynn!
Our amazing 7 year old daughter, Oaklynn, has Rett syndrome. She was born typical and met all her milestones. At around 12 months old we noticed things slowly changing. She wouldn't hold her own bottle and had a hard time feeding herself. She slowly started to loose skills until she lost everything. No longer able to even crawl or use her hands to pick up a toy. She was finally diagnosed with Rett Syndrome at 21 months old. Rett Syndrome is a unique development disorder that is almost always in girls. It is caused by mutations on the X chromosome on a gene called MECP2. It occurs worldwide in 1 of every 10,000 female births. Rett syndrome causes problems with learning, speech, sensory sensation, mood, movement, breathing, cardiac function, chewing, swallowing, and digestion. Kids with Rett Syndrome also experience dystonia, anxiety, stereotyped hand movements, teeth grinding, sudden death while sleeping, scoliosis, feeding problems that may result in a Gtube, seizures, GI problems, sleeping problems, apraxia, and more. Kids with Rett Syndrome also can't regulate their body temperature. They over heat very easily. They don't sweat to cool themselves down so they can get heat exhaustion quickly. Oaklynn is an amazing little girl. She needs total care as she can't do anything on her own. We visit the hospital quite often and she actually likes it there. Many nurses and doctors know us by now. She has amazing eye contact and is able to communicate with you by just using her eyes. She understands everything that is going on. She has the brain of a typical 7 year old. She is very smart. She is literally just trapped inside a broken body. If you know a child with Rett Syndrome, talk to them as you would a typical child their age. You will see them light up and give you a smile you will never forget. @special_needs_mama #rettsyndrome #specialneeds #mysilentangelsfight #rett #spreadawareness #careaboutrare