AIBEN IS A HERO.

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Submitted Date 07/09/2019
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Aiben Is A Hero – and he wants to say thank you.

The Hero's Background.
Aiben, is a hero.
He was born with a rare brain and neurological condition which affects only 1 in every 750,000 who have seizures or cerebral palsy.
He was diagnosed with the condition at the age of 10 weeks old, after falling into a coma due to extreme seizures that stopped his pulmonary system from working.
This condition runs with an very high mortality rate. No child usually lives past the ages of 6 months to 1 year.
Aiben, turns 10 years old, near the end of July, and is doing stuff the medical field said he wouldn't achieve or ever be able to.


The Advocate.
New ways of helping him survive and thrive had to be explored. For example along with horrific seizures, where he stops breathing, his heart stops and he goes into a state similar to a dead spider, on his back, Aiben has had many difficulties to overcome.
Including occupational, speech and certain physical therapists that wouldn't work on him because he couldn't be treated as text book case and believed he was a lost cause.
Finding the right care for him was difficult. No one was listening to the advocate, his mother, who had over 20 years experience in the field of nursing, medical and similar.
"Why is it people see a diagnosis before they see the person within?
How can anyone call themselves a decent human being if they are not even willing to give another person a chance for a better quality of life, but instead give up on them before hand?
Too many people don't understand that it is all about mental attitude and the mindset around the one struggling that sets the example that sometimes shows us that even the impossible can be made a reality.
Just have to breathe, remember no matter how bad it seems or how stressful it is but a fleeting moment in the grand scheme of time. It will pass, and keep trying.
Does Aiben have a hero?
Yes, has expressed that I am his…"

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Aiben was not thought to last past a year, and as is often the case, most parents give up. This parent, his Advocate didn't.
Going out on of her way, giving up her work, just to make sure he had every opportunity to do better. Constantly fighting what felt like a loosing battle with Healthcare issues, especially the specialists in a wide variety of fields where Aiben desperately needed their understanding.
Because his Advocate had watched other parents get a devastating diagnosis and literally wrap their child up in cotton wool, smothering them, and silently watching numbly outraged, as those other children passed the world.
Without a chance.
"The other parents and care providers broke my heart, because as soon as they had heard a bad diagnosis they had already given up on the child.
How can anyone do that?
It was painful to watch and be a part of, but I was determined. I was not going to let him down.
Part to the honor, and privilege of being a parent is about self sacrificing for to give them a chance. Do all you can and set by example."

Inventive became a way of life, as, a light board was made by hand just so he could learn to read and do school work.
Tutored at home, therapies all done at home, it was a constant battle to insure he thrived and could do as much as possible.

Comments

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  • David Ross Washington Jr 3 months, 1 week ago

    This condition runs with an very high mortality rate. No child usually lives past the ages of 6 months to 1 year.
    Wow, that's a horrible diagnosis. It really is about mental attitude. I remember getting into a car accident, and my only thought was to be there for my siblings, and that this could not be my time to go. I pulled through. Our mental attitude affects our physical well-being and mental well-being, it is how we survive, adapt, and thrive to various conditions of life. Every human deserves the right to be given the chance of a quality life, like this child.

    • Cat 3 months, 1 week ago

      Thanks you. I will be putting up more of this little hero’s life battle as and when I can.

    • Cat 2 months, 2 weeks ago

      It really does, and those who are caregivers to the individual and their needs too... thank you for reading this.

  • Tanya Marion 3 months, 1 week ago

    Powerful. Thank you for sharing 🙏🏻

    • Cat 3 months, 1 week ago

      Thank you very much, and there will be more posted on Aiben’s story as and when I can. Please be patient as I am new to this website and still trying to work out the features.. lol

  • Tanya Marion 3 months, 1 week ago

    Feel free to message me if you ever need help with the site 😊 I’m happy to help!

    • Cat 2 months, 2 weeks ago

      Thank you so much I appreciate your help.