Dandy Walker Malformation

Dandy Walker Malformation is one of the toughest medical diagnoses for me. Although there are no definite answers our neurosurgeon will personally tell you, "It's one of those things where we see kids that come in and results are devastating, but on the other hand theres some kids that come in and you would never know what is going on with them." Dr. Troup- GHS

Dandy-Walker syndrome (DWS), or Dandy-Walker complex, is a congenital brain malformation involving the cerebellum and the fluid filled spaces around it. A key feature of this syndrome is the partial or even complete absence of the part of the brain located between the two cerebellar hemispheres (cerebellar vermis).[1] The Dandy-Walker complex is a genetically sporadic disorder that occurs one in every 25,000 live births, mostly in females.[2]

When I was Pregnant with my daughter we did the ultra sound every parent waits for. Is It a Boy or Girl? Well after the long debate between my mother and I, ITS A GIRL!!!!! After the ultra sound i was abruptly put into a room alone and was told that my baby girl was missing half her brain. Not only that but her heart wasn't functioning properly either. After holding myself together long enough to make it to the waiting room, I grabbed a hold of my mom and began to cry hysterically thinking this was the end for my baby. After discussing everything with the one person I completely trust we decided to begin a new path, To have the Strongest Faith there is today!

Of course everyday is a struggle, but today is a new day and tomorrow will be even better.

I will be Adding plenty of content to this page as I go!

I have to say everyday is like walking through a dream. From what the doctors told us to expect with my daughter to what we see is so amazing to me. She is one of the smartest little ones I have ever met. Everyday I wake up and smile so big waiting for her to show me something new. It's as if she learns as she is sleeping and wakes up telling me all about it.

I had a friend tell me the other day, " What if God is speaking to you through your children?" To be honest, maybe he is because every time I look at them I cant help but smile and think I love them so much!

My little girl has become one of the smartest 10 years old's. She is on a path of success and wants to become a historian as she gets older and is already working away to achieve this. She continues to defy odds.

Alexia has a dual shunt for Dandy Walker Malformation and Hydrocephalus to relieve pressure from her brain. She is thriving because of this. She has migraines every now and then but she is here with us and she is happy.