Meet Sophia Marie Hicks

Meet Sophia Marie Hicks. Born March 28,2013. Not only is she the happiest little girl and so darn cute she is my niece. Her mother Megan had a very normal pregnancy and labor with no complications. Before her mommy and daddy took her home she had not opened her eyes. The doctors said that they were in there, and it was normal for some newborns to keep there eyes closed. So the three of them went home. Time went by and she still was not opening them up. The pediatrician stated not to worry that in time she will open them. By the next week, Sophia's left eye opened up a bit, and two weeks later the right eye opened, but still just a bit. By the time Sophia turned three months old, her eyes were drooping and barely open, they moved in a different way, and she was unable to focus.

Out of options the pediatrician referred that Sophia should see an eye doctor, but they were unable to find anything. Soon after Sophia turned four months old she was referred to a neurologist and had a MRI done.  Here is where Joe and Megan (Sophia's parents) found out that parts of her brain did not grow properly and that there was no reason why it had happened. That there was no cure, only preventable measures to help ease the disease from progressing rapidly and treat any other issues that may arise from the disease. This disease is called Dandy-Walker Syndrome.

My sister Megan is a strong, bull headed person, so she did not let this take her down. She got Sophia into  therapy and got the best team of doctors there is in the Cleveland area.

Since finding out Sophia had Dandy-Walker Syndrome she started having seizures and is being treated with medication that also makes her sleepy, but since she started her medication she has only had one. Sophia just had eyelid surgery November 8th so she can see properly out of the "more" droopy eye, it is very swollen but she is a real trooper! They go back for the other eye to be done next month.

She also has a ASD hole in her heart that is medium sized and will need intervention when she's a bit older.

Sophia is also ataxic which means she's very unbalanced and wobbly all the time and her head bobbles. This can cause concern for walking in the future. BUT her parents are working very aggressively with Sophia's therapy and heath care to try and give her the best chance at life. Sophia is SUCH a joy in her families life and is so happy to be here. She's amazing in therapy and can go for hours if mommy and daddy let her without a complaint.

Her mommy and daddy are so proud of her and love her with everything they have. The rest of us in her family are so grateful to have her, her smiles, her courage and strength.

We all love you Sophia Marie Hicks!


Follow Sophia's progress on Facebook and Twitter
https://www.facebook.com/Sophias.Journey.Life.with.Dandy.Walker.Syndrome

https://twitter.com/search?q=joehix23&src=typd



To help and donate to Sophia's future please click the link.
http://www.youcaring.com/medical-fundraiser/help-sophia-grow-strong-and-dream-big-/104707