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  1. #1
    los2188's Avatar
    los2188 is offline North Carolina Tar Heels..your NCCA Champs!!
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    Baby Born With Most of Skull Missing Celebrates First Birthday

    Jaxon Strong

    "Jaxon Strong, the boy who given just days to live when he was born with most of his skull missing, has proven everyone wrong and just celebrated his first birthday, The Daily Mail reports. Before his birth, his parents, Brittany, 27, and Brandon Buell, 30, from Tavares, Florida,​ were told that their son had a rare brain malfunction called Microhydranencephaly. "
    http://www.cosmopolitan.com/lifestyl...irst-birthday/
    Before you criticize someone, you should walk a mile in their shoes. That way, when you criticize them, you're a mile away and you have their shoes.

    "When from a long distant past nothing persists, after the people are dead, after things are broken and scattered, still alone, more persistent, more faithful, the smell and taste of things remain poised a long, long time like souls, ready to remind us, waiting, hoping for their moment amid the ruins of all the rest, and bear unfaltering in the tiny and almost impalpable drop of their essence the vast structure of recollection."

  2. #2
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    That's amazing that he's made it! Both for the parents and for the medical community. To be able to see this and say, "Well hey. It's not a death sentence that it used to be!"

    I'm wondering if he has full cognitive function that those born with a skull have.

    I've seen people with prosthetic parts of their skulls before, do they think they can give him one so he can be like a normal boy and not have to worry so much about damaging his brain?

    This is seriously so fascinating and it must be so exciting for the family.

  3. #3
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    Quote Originally Posted by EmmaliLucia View Post
    That's amazing that he's made it! Both for the parents and for the medical community. To be able to see this and say, "Well hey. It's not a death sentence that it used to be!"

    I'm wondering if he has full cognitive function that those born with a skull have.

    I've seen people with prosthetic parts of their skulls before, do they think they can give him one so he can be like a normal boy and not have to worry so much about damaging his brain?

    This is seriously so fascinating and it must be so exciting for the family.
    He isn't just missing his skull, he is missing a large portion of his brain as well. He therefore can not possibly have full cognitive function. He is severely developmentally delayed.
    Just my opinion

  4. #4
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    The brain is actually destructed in the womb and the skull collapses. This is genetic and the chromosone has been mapped in recent years. Someone close to me had a stillborn with this. It is very heart wrenching. Usually the child will only function to do basic things like eat. The real miracle would be if he ever walks or talks or acknowledges anyone.

  5. #5
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    I think the Georgia-born sisters Elvira and Jenny Snow had this condition and others too, who lived well into adulthood and functioned quite well, physically?

    I only recalled the Snow sisters because they appeared in the book, 'Very Special People' and also the notorious movie 'Freaks' which was banned for a long time. They had no trouble walking - they were locked up sometimes, because they were forever wandering. Their speech was severely limited though, if I recall correctly.

    I guess there are varying degrees (if it is the same condition) but little Jaxon is sitting upright and appears quite alert, so I hope he gets to live as full and active a life as possible, in the heart of his family.

    This is an academic's post about the movie - but which does mention the circus name to describe the condition, which is historical and no longer used. There is a video clip of the sisters dancing in it at the link. Oddly, another actor with microcephaly, Schlitzie, who is also in the clip and whose skull appears to be the worst affected, also appears to be quite a skilled actor when reaching up and having to look pitifully towards 'Madam'.

    I'm always torn about the movie - it was exploitative because the stars of it either didn't get paid enough or didn't get their wages. But the reason it was banned seemed to be that the public at the time seemed to find people with disabilities appearing on the big screen offensive...which doesn't seem right either.

    http://judgmentalobserver.com/2009/0...wnings-freaks/
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  6. #6
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    'We feel the looks and stares': Father of little Jaxon born without most of his skull reveals the horror abuse he and his wife have received from trolls - who say they should have had him aborted

    http://www.dailymail.co.uk/news/arti...-son-live.html
    Before you criticize someone, you should walk a mile in their shoes. That way, when you criticize them, you're a mile away and you have their shoes.

    "When from a long distant past nothing persists, after the people are dead, after things are broken and scattered, still alone, more persistent, more faithful, the smell and taste of things remain poised a long, long time like souls, ready to remind us, waiting, hoping for their moment amid the ruins of all the rest, and bear unfaltering in the tiny and almost impalpable drop of their essence the vast structure of recollection."

  7. #7
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    No, Elvira and Jenny Snow had a condition called microcephaly (small head, or pinhead). They weren't missing their skull. This child's condition is even more severe, because in addition to microcephaly he also has hydranencephaly. His condition is called microhydranencephaly. So he isn't expected to function at the level of Elvira and Jenny Snow. They say it's a miracle because he lived (so far) to one year. Most children with this condition don't last so long. But he isn't expected to walk and talk as far as I can tell. Basically his brain is severely deformed with large parts of it missing. There is no treatment or cure for this condition because we can't fix the brain that isn't present.

    “Children who have this are neurologically devastated,” said Ethan Goldberg, a neurologist at The Children’s Hospital of Philadelphia who has not treated Jaxon. “The neurons are not there. Neurons are just absent. There’s no way to put them there. There’s nothing even to repair. It’s like having a car with no engine. There is absolutely no treatment. The ship has sailed long ago."
    http://www.boston.com/health/2015/09...4IK/story.html
    Last edited by jjenny; 09-29-2015 at 02:17 PM.
    Just my opinion

  8. #8
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    But as he grows the aesthetic appearance of the skull can be remedied to some degree. Neurons can handle more than one function, as science is learning. We may be surprised how well he eventually does.
    Now, I am not saying he is going to college, getting married, and living to be 80. But he might have a semi-normal life.
    "If you are lucky enough to find a way of life you love, you have to find the courage to live it."
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    Unless I provide a link or refer to a specific link, all my ramblings are theories, speculation, scenarios based on what info is available and my own unique life experiences.

  9. #9
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    Quote Originally Posted by wendybtn View Post
    But as he grows the aesthetic appearance of the skull can be remedied to some degree. Neurons can handle more than one function, as science is learning. We may be surprised how well he eventually does.
    Now, I am not saying he is going to college, getting married, and living to be 80. But he might have a semi-normal life.
    He doesn't have most of his neurons. I don't think he has any chance at "semi-normal" life. As far as I can tell children with this condition will die within years of being born (and most don't even make it to one year, which is why they are saying it's a "miracle.")
    Just my opinion

  10. #10
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    Having given birth to an anencephalic child, it's difficult to even type let alone get my points across but I will try. There are different degrees of severity in these cases but most all are non functioning and life is incredibly short. My baby survived for 2 days, he couldn't see, hear, smell. Most can't even take a bottle or nurse because their non existent brain can't tell them to swallow and they will choke to death.

    In this case it's obvious there is some brain activity but nevertheless, IMO Jaxon is a true miracle.

    Also a lot has been learned in recent years and it's been discovered there is a lack of folic acid in the mother's diet during the first 4 weeks of pregnancy that causes this condition. HTH http://www.cdc.gov/ncbddd/birthdefects/anencephaly.html


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    ((((Tillicum)))) I just wanted to send you a cyberhug and tell you I'm thinking of you.



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