Schizencephaly
Posted by
Tracy Nicolaus
My grandson has been diagnosed with this very rare brain disorder
Schizencephaly.
What can I do to help these kids? 22 and 23 years old. 2 babies. A newborn girl and 18 month old Aryan who is the one with this disorder. This is some seriously nasty stuff here kiddies and the outlook for these babies is grim at best. My son and his girlfriend have decided that the best way to handle it is to remain in Ohio (I'm in California) and pretend it's not happening. They go to the doctor, they have MRIs, CAT scans, blood work and they are paralyzed in fear.
Were talking about a very poor, VERY POOR couple and their 2 infants here.
There has GOT to be resources available. This kid weighs like 40 pounds and can't sit alone. He will need to be carried or in a wheelchair. He may lose sight, hearing. He may have total paralysis, he WILL have seizures and he will me retarded to some extent.
I hate being uneducated but I have no answers. I've scoured the net. Where can I find someone who can go to their house in New Philadelphia Ohio and give them hope, encouragement and even solutions?
Any ideas? Anyone?
Posted by Tracy Nicolaus
My grandson has been diagnosed with this very rare brain disorder
Schizencephaly.
What can I do to help these kids? 22 and 23 years old. 2 babies. A newborn girl and 18 month old Aryan who is the one with this disorder. This is some seriously nasty stuff here kiddies and the outlook for these babies is grim at best. My son and his girlfriend have decided that the best way to handle it is to remain in Ohio (I'm in California) and pretend it's not happening. They go to the doctor, they have MRIs, CAT scans, blood work and they are paralyzed in fear.
Were talking about a very poor, VERY POOR couple and their 2 infants here.
There has GOT to be resources available. This kid weighs like 40 pounds and can't sit alone. He will need to be carried or in a wheelchair. He may lose sight, hearing. He may have total paralysis, he WILL have seizures and he will me retarded to some extent.
I hate being uneducated but I have no answers. I've scoured the net. Where can I find someone who can go to their house in New Philadelphia Ohio and give them hope, encouragement and even solutions?
Any ideas? Anyone?