More than a Diagnosis

We haven't shared many specifics about Aria's diagnosis. It's scary and overwhelming with so many unknowns. But we want people to look past her diagnosis because she is so much more than that. She is a daughter, a sister, a worthy little girl made in His image. We want people to see the precious soul that lies within our little warrior girl.

Aria was born with a rare brain abnormality called Schizencephaly. Parts of her brain did not form properly. The good news is that only one side of her brain was affected - the left side. Unfortunately, the majority of the left side of her brain has been impacted causing Global Developmental Delay and Failure to Thrive. The left side of the brain controls the right side of the body. Because of this, her right hand is often in a tight fist. Learning how to use her right side is going to be very challenging. The part of her brain that controls vision has also been compromised so she is often straining her eyes to see her surroundings.

Each case of Schizencephaly is unique as different parts of the brain can be impacted. The symptoms vary widely from high functioning adults finding out later in life that they have the condition to children who are bound to wheelchairs and are developmentally infants. The worst cases found are when both sides of the brain have been impaired. 

The impact on her development so far is quite profound. At 16 months of age, she is like a newborn in many ways. She is just starting to gain head control and rolling from side to side. For our sweet Aria, each baby step forward will be difficult. She has not been getting the early childhood intervention services that she would be receiving if she was home which is likely impacting her development. We are hopeful that once she gets home and into therapy that she will progress and begin mastering some new skills.

While we prepare for the worst, we are praying for the best outcome possible. We are hopeful that Aria will be able to reach some milestones and we hope that you will join us in celebrating when a seemingly simple task is mastered by our little fighter.  When asked about the long term affects of Aria's condition, the International Adoption Clinic had this hopeful message to say:

"What can be remarkable in children is that their brain is still growing and developing and potentially has more plasticity or flexibility than an adult brain.  We have seen instances where a newborn/young infant has an injury to a certain part of the brain, but is still young enough that the brain is able to compensate and "re-map."  This does not occur 100% of the time, and given the extent of her brain loss, I still expect her to have functional deficits that may not be able to be fully overcome, but given her young age - there still is a chance that there is not quite the direct correlation between the missing brain portion and deficit as we might see in an older child/adult."

Please keep Aria in your prayers. Pray that her brain heals, pray that she starts to grow and thrive, and pray that the remainder of the adoption process goes quickly so that she can finally come home.