Rare Brain Disorder Has Family Considering Relocation for Better Assistance
April 8, 2017
by Kathryn Baatz
My son, Andrew, was diagnosed at four months old with a very rare brain disorder known as schizencephaly. His full diagnoses is bilateral closed lip parietal schizencephaly. We were orignally told he had a stroke in utero, however that may not be the case. Schizecephaly can also occur with genetic defects. Andrew is also missing his septum pellucidum.
A (translucent hedge) is a thin, triangular, vertical double membrane separating the anterior horns of the left and right lateral ventricles of the brain. Andrew has a cleft through his first and second ventricular lobes and the right side of the parietal lobe. Usually missing the the septum pellucidum causes septo optic dysplasia. However Andrew does not have this. It’s typically found secondary to another disorder such as schizencephaly, porencephaly, and hydrancephaly.
Andrew does have other diagnosis’ including; cerebral palsy, partial paralysis of the right side, developmental delay, cognitive delay, speech delay, epileptic events, central sleep apnea, obstructive sleep apnea, restless leg syndrome, Duanes Syndrome, strabismus and amblyopia, exotropia, pronation of both feet, sensory problems, non-verbal, and severe allergies.
We have decided it’s time to move out of Florida and to Texas in order for him to get the medical care and education he needs. We’ve had many problems with doctors, insurance, and therapies here. Andrew needs more therapies, which cannot be provided here. We’ve been through many doctors, and most were very rude, hurtful, and uncaring. We need answers. At this time, we’ve been waiting for a developmental specialist as it has taken over a year to get him in. I tried to get him into other places, but the wait was just as long and over five hours away. Andrew really needs this, there are some things we still haven’t got an answer for. Andrew currently needs a speech device, and medical equipment for bathroom use and railings.
I thank you very much for any support and prayers.
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