Who Am I?
Hi there! My name is Rowen and I am 4-years-old. My amazing mommy welcomed me into this great big world on February 23, 2012. When i was 7 months old my doctors noticed that I wasn't reaching expected milestones. Although I do have a really bright smile, I am unable to crawl, sit up, roll over, talk, or feed myself in addition to having a high palate with a little sub mucus plate. My body burns twice the amount of calories, my protein levels are low and I have digestive problems. My Diagnosis When I was only 10-months-old, my mommy noticed something wasn't right so she trusted her instincts and took me to Children’s Hospital in New Orleans where the doctors said that I experienced a febrile seizure, which is a fever-induced seizure. While I was there they did an X-Ray and determined that I had hip dysplasia and also an MRI scan of my brain, which showed that my Myelin were not growing together in order to cover my nerves. Currently, my doctors have diagnosed me with being developmentally delayed.
I don’t have good control of my eye muscles and it is uncertain how well I can see but that doesn’t stop me from smiling and loving! I’ve been through a lot in my little life so far:
• Several months later when I made my first birthday my doctor completed a genetic test and it came back normal.
• One year later when I made my second birthday, I had a surgery to lengthen my muscles around the inner part of my hips. I was in a half cast for 6 weeks but my mommy did the best she could to make sure I was comfortable and happy.
• On March 31, 2015, I had another surgery to secure my hips in place using brackets and screws. Again, I was in a full cast for 5 weeks.
• On September 15, 2015, I had surgery to remove my brackets and it was a success.
• In February of 2016 I started experiencing seizures. I am now on seizure medication
There are some things that have been really helpful for me:
• I am on medicine help my muscles relax.
• I go to physical therapy and speech therapy 2 days a week at Children’s Hospital.
• I like to close my hands so the Drs. made me a special splint to help me open them
• I have a Stander (a special equipment that secures me in a standing position) It helps with digestion, provides long-term stretch on my leg muscles that get tight. Opens my chest to help with breathing, and circulation of blood throughout the body
How Can You Get Involved?
Last summer, I was able to swim with a cool new floating device that my mommy got for me and I felt like such a big boy! Now, I am so excited that I got to start school this year and I love my teacher. I am able to go two days a week and also receive physical therapy, speech therapy and occupational therapy while I’m there. They really love me and we even get to color, use play-dough and my favorite thing of all, which is reading books! I am so grateful for these opportunities and how much my family loves me. They love me SO MUCH that they want to get more answers about my condition. There is a very costly genetic test that runs about $7,000. With your help, we can make this happen so that I can get all the help I need in order to live a happy and healthy life!