Schizencephaly Awareness for Leland

When Leland was 7 months old I finally gave in and agreed with my fiancée (Cody Leland's s dad) that we should have him checked out we noticed that he was not like other babies. I seen all my friends kids sitting up and crawling and playing and even babbling a few words after constantly working with Leland he was still not doing any of that. He was barley holding his head up he couldn't eat anything but formula without choking. So we took him to his pediatrician and she said she wanted Help Me Grow to come evaluate him and she scheduled for a brain scan. She said that it looked like maybe he was autistic or just really behind. Or something not really neurological at all maybe physical. so we waited and waited and Help me grow came and said the same thing. They even told me the worst they think it could be is Cerable Pulsey but they didn't think it was anything like that or that severe I was actually worried going into the office that that's what it could be. . well after we got his scan results it was much worse than any of that..

August 17th when Leland was 8 months old the wait was over. we sat down with our sons pediatrician and found out that he has a rare birth defect called Schizencephaly. Which is clefts in the brain,  the main side affects are epilepsy and cerable pusley. As you can see from the brain scan updates it is a severe case. Schizencephaly is so rare that he is the first patient she has ever had with this when she got the results she had to go home and study up on it just so she could explain it. When I was pregnant with him during my first trimester his brain didn't form the way it was supposed to it could have been anything from him having a stroke to me having a cold.. We don't know and there isn't a way to find out. There is no cure or treatments. Only physical therapy and speech therapy and ect.  And he is only a baby he is my baby.. So it's new to all of us. 
He is eventually going to form seizures (epilepsy) he hasn't yet but we still don't know much. As of now doctors say that he will never walk or maybe not even talk, use the bathroom on his own, and he could also die from this they said from colds even.. Right now we don't know how this will affect him exactly in the future. We don't know if he will  eat or need a feeding tube. We don't know if he will do really anything. We just have to let Leland be the best Leland he can be. And now as I am updating this description after creating it a month ago I'm finally okay with that.
 He also has severe mental disabilities as a side affect of Schizencephaly.  I do not drive nor work before this I was a stay at home mom and dad worked. We have 4 other children. All girls. He is the youngest and the only boy.
Well since dad is the only one who can drive he has to take some time off work considering Leland is going to have at least 4 appointments all the way in Cincinnati all week every week and even more to come no job would of allowed that. We have started in home care too so hopefully things will get easier. The pediatrician recommended that he takes some time off anyways because of how badly me and Cody reacted to the news... this did make our world crash down but we are slowly starting to realize it will all be okay and he is still our baby boy that he was a few weeks ago. I have since filed for SSI as recommended by all his doctors it's just a long waiting process. They have also pointed me in the direction of many other resources, but again, waiting process. If you can not donate that's fine. Share and say a prayer and move on. If you have any questions just write me and /or his father Cody. Thank you so much. 
"We are R.A.R.E"
Raising Awareness Research and Education for Schizencephaly.
http://www.ninds.nih.gov/disorders/schizencephaly/schizencephaly.htm