Today I got to address a large crowd and talk about Rett Syndrome and my view of it as her mom. Here is my speech...
Good Afternoon. My name is Whitney and I am Oaklynn’s mom. She was diagnosed when she was just 21 months old. That was the hardest day of my life. I didn’t know anything about Rett Syndrome so I got online and I googled it. This is what I came across while researching it.
Rett Syndrome is a rare genetic neurological disorder that almost exclusively affects 1 in 10,000 females. It strikes at random in early childhood. Most babies with Rett Syndrome seem to develop normally at first, but symptoms surface after 6 months of age. Many girls live into adulthood, requiring total, 24-hour-a-day care. There is no treatment beyond supportive measures such as feeding tubes, bracing, orthopedic and GI surgeries, and medications for anxiety and seizures. Symptoms include Loss of speech and motor control, functional hand use replaced by compulsive hand movements, disordered breathing, severe digestive problems including constipation, orthopedic abnormalities including scoliosis and fragile bones, disrupted sleep patterns, extreme anxiety, seizures, impaired cardiac and circulatory function and Parkinson-like tremors. About 50% of individuals affected do not walk.
I continued to research it and kept coming across the same stuff. Telling me what my daughter will never do. The medical problems she would have. The hardships she would face, how hard my daughter’s life would be and essentially how hard my life was going to be caring for her. It was tough. After reading this I cried for days.
It wasn't until a week after her diagnosis that I stopped researching Rett Syndrome and decided to stop focusing on what the medical books told me my daughter wouldn't do and start focusing on what she can do and enjoy each and every day I was able to spend with her.
I remember when she was about 2 years old I sat on the floor with her and decided to have a conversation with her. Knowing she couldn't talk and wasn't going to talk back to me, I still decided to talk to her and ask her questions. As I started talking to her I saw a sparkle in her eyes. I noticed something I never saw before. She was actually talking to me with her eyes. Her expressions changed and there was this sparkle I had never seen before. As time went on I came to realize what an inspiration she was. She was strong, determined, and happy despite everything she was going through.
There was so much about her that I found out while being her mom that I didn’t read about online when googling Rett Syndrome. These girls are so amazing. They are strong, courageous, inspirational, and despite everything they go through, they still put a beautiful smile on their faces. They are just like any girl their age, just trapped inside a broken body.
I know that one day we will have a cure. We will gather in this same spot and these girls will be running up these stairs, standing where I am standing, holding this microphone and thanking each and every one of you for your support, encouragement and for believing in them