Schizencephaly? How it effects our Sweet Angel?

Lisa Lee | Schizencephaly Awareness
3 Nov 2013

Ever since we found out about Gracelyn’s diagnosis of Schizencephaly, we have found that people don’t know what it is or how it effects those diagnosed with it.

Schizencephaly:
Many sources define Schizencephaly as a very rare cortical malformation that results in grey matter-line clefts that can impact one or both sides of the brain. The brain malformation can occur during the first 5 to 9 weeks of pregnancy. Also known as Split Brain disorder, the first documented case of the disorder was dated in 1946 by Yakovlev and Wadsworth. It’s predicted that in 1998, the name Schizencephaly was adopted by the medical community.With only an estimated 7,000 cases report, Schizencephaly is the second rarest known brain malformation. According to a study in the UK, the probability of having Schizencephaly is 1.48 for every 100,000 births (Stang and Dr. Krucik, 2013). www.wearerare.org

Effects
Gracelyn is effected by bi-lateral open Schizencephaly. You ask what this means? Let me start by saying. This condition effects her Left side of her Brain. They have estimated that she is missing 50% of her Brain. She is also effected on her right side of her brain. Do to her Schizencephaly she has serval other health conditions. She has right sided Cerbal Palsy. She faces seizures. Eating issues do to Neurological disorder. Which is now causing her to need a Feeding tube. Gracelyn is also behind developmentally. She is 2.5 years old and still not walking with out assistance. For the most part she is doing better then other Kids that have the same condition.

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what does her future look like?
This is hard to answer. The one thing we know is that she is a fighter. She has all ready done more then any Doctor believed she would. Joshua and I also know that we are thankful for every day God gives us with Her.

Prayer request:
1. Please pray God continues to guide us in getting and giving the best care.

2. For the best medical team possible.

3. That the meeting with the up coming surgeon will give us needed answers and they will see our point.

4. God will provide the financial means to get the care she needs for current, past and future medical cost.

Please feel free to share.

Contact Info
Joshua & Lisa Lee
9601 E Iliff Ave Apt 1201
Denver Co 80231

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