Dandy-Walker Cleveland 5K Run/Walk Donation

If you are unable to attend the walk, or simply want to just donate to the cause, you can do so securely. Please click the link below. All proceeds go to the Dandy-Walker Alliance and all donations will be acknowledged in writing for you to use as a receipt for your tax records.

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

A simple walk for a huge cause

On May 17,2014, there will be a Walk/Run fundraiser in the Cleveland, OH area to raise public awareness and promote the need for more research of a birth defect known as Dandy-Walker Syndrome and a commonly associated condition called hydrocephalus.

Dandy-Walk involves an area at the back of the brain called the cerebellum and the fluid-filled spaces around it. The Centers for Disease Control and Prevention estimate that Dandy-Walker occurs in at least 1 in 5000 infants. Although it is one of the most common brain malformation, still little is known about Dandy-Walker and it cause(s): today there is no cure.

Individuals with Dandy-Walker can have a wide range of manifestations from quite mild with some children having normal cognition and others never achieving normal intellectual development. Longevity depends on the severity of the syndrome and associated malformations. The presence of multiple congenital defects may shorten life span.

 Four years ago, Eric and Andrea Cole were blessed with a son, Ryan, born with Dandy-Walker; he soon developed hydrocephalus. After learning that no advocacy organization existed for the Dandy-Walker Community, the Cole's united with other families and established the Dandy-Walker Alliance, Inc. as a 501(c) non-profit public charity dedicated to providing educational and informational activities, supporting research and organizing events to increase public awareness for Dandy-Walker. Today, the Dandy-Walker Alliance disseminates information in 41 languages to 73 countries around the globe for free. You can learn more about Dandy-Walker and the Alliance by vising the website at www.dandy-walker.org.