You know what upsets me every time even when I’ve emotionally prepared myself for it?
I can’t find any information on adults with my disorder because there are no adults with my disorder. Because people with my disorder don’t live very long. And I can’t find a single fucking facebook group that doesn’t plaster my fucking news feed with “prayer chains” and inspirational posters.
I don’t know why I do this to myself.
It just occurred to me that I’ve never fully explained why I’m doing this. You see this handsome little guy right here? He is why I’m doing this. This is my son Skylar, he was diagnosed with uni-lateral, open lipped Schizencephaly in October of 2009. The day of the diagnosis has radically changed our lives forever.
What is Schizencephaly?
Schizencephaly is an extremely rare developmental birth defect characterized by abnormal slits, or clefts, in the cerebral hemispheres of the brain. The estimated prevelancy of this is 1.54 in every 100,000 individuals. Babies with clefts in both hemispheres (called bilateral clefts) commonly have developmental delays, delays in speech and language skills, and problems with brain-spinal cord communication. Individuals with clefts in only one hemisphere (called unilateral clefts) are often paralyzed on one side of the body, but may have average to near-average intelligence. Individuals with schizencephaly may also have an abnormally small head, mental retardation, partial or complete paralysis, or poor muscle tone. Most will experience seizures. Some individuals may have an excessive accumulation of fluid in the brain called hydrocephalus. To put it simply, his brain never fully developed while he was in my womb, and he’s missing about 70% of his right side of the brain.
Is there a cure? A treatment for Schizencephaly?
Unfortunately there is no cure, There is no magical medication. Even with all our technological advancements in health and medicine- there’s no such thing as a brain transplant. Depending on the severity of the affected person there is medications to control the seizures, and therapies.
How has this affected him?
Since the diagnoses has has experienced seizures; also diagnosed with a rare form of epilepsy called West Syndrome (Infantile Spasms), he has hemiparasis and hypotonia on the entire left side of his body. He is delayed in all categories of his development since the seizures, it has severely delayed him in his gross motor skills. He can only say two words, he cannot walk (although he really wants to), or crawl, and it is a rarity for him to use the left side of his body due to neglect. He is currently in speech, occupational, and physical therapy all of which he has every week, and is also on seizure medication to control them. He just got an AFO for his left foot because it’s inverted and pronated, along with a brace for his hand because his thumb is out of place and beginning to show signs of wrist drop due to neglect. Communication is difficult for him due to his left side being weak- so his jaw and tongue is weak. And his eyes are also affected due to the one weak side- they drift quite often and his septal leaflets are missing.
Besides all of this I can proudly say he is a miracle baby. Despite the vacant space inside of his skull, he has pushed and has made so much progress since the seizures have stopped. And I could not be more proud. Two years ago, God gave me a miracle, and I’m so glad he did.
Unfortunately I cannot work due to my son’s birth defect for the time being, my place is at home with him, watching him, doing his therapies, and taking care of him to the best of my ability. My insurance doesn’t completely cover everything (the specialist appointments, therapy, and so on). I want to begin purchasing more therapy equipment for him, contribute to his medical bills, along with his other needs.
All of the money made is for my little monster. If you would like to assist me, you could purchase one of the items on my Storenvy.
Thank you guys for following, and to all of my customers- it means so much to me, I couldn’t say thank you enough<3
racial profiling, courtesy of @RantingOwl.
"Racism in America is dead"
can someone destroy these people over twitter pls
CAN PEOPLE REBLOG THIS, PLEASE?no souls. at all.
this is a race war.
"it’s not about race."
fuck outta here. you try doing this shit. live a life in a country that is not here for you at all and then tell me how that goes.