Aaron Robinson's Hydrocephalus Ambassador' WALK Page
Join me as I WALK to End Hydrocephalus! As you may know, hydrocephalus is a life altering, life threatening condition, cause by an abnormal accumulation of cerebral spinal fluid, resulting in pressure on the brain. The most common treatment for this condition is brain surgery to implant a medical device called a shunt, which has a 50% failure rate in children within the first two years. I walk so that we can find a cure!
I wanted to share a poem I wrote, especially since I haven't been feeling my best, and I have felt super inspired with the walk approaching. Please domate to a cause that is so near and dear to my heart.
Or even how to spell our name.
You see the pressure inside our brain makes it quite impossible to see.
The doctors know there isn’t a cure,
Yet, they frantically run to locate an answer.
Hydrocephalus has many forms and impacts many lives,
From unborn infants to those who have been around for generations.
Each one with a story to tell, a light to be shown.
For one brain surgery is too many.
Everyone knows what BS means however,
With a condition like this No More Brain Surgery Can be summed up by,
#NoMoreBS
This condition is the cause of increased cerebral spinal fluid built up in the ventricles of the brain,
The increased pressure on the tissue of the brain causes a long list of conditions no one wants,
Sometimes we cry out in pain as we don’t know what is happening and cannot be consoled.
Family and friends reach out to others for support to understand what to do to help,
Surely someone has seen this before.
More than 1 million Americans are affected by Hydrocephalus,
One out of every 770 babies will develop Hydrocephalus,
Up to 50% of those infants diagnosed will have a learning disability,
The only known cure for this is brain surgery to place a medical device called a shunt,
This device has one of the highest failure rates on the market.
You see Hydrocephalus isn’t as well-known as Cancer, Diabetes, or Alzheimer’s.
The connections that are created are by word of mouth,
Feverishly researching the internet late at night,
Googling what the symptoms are or what is cerebral spinal fluid and what does it do?
This leads us down rabbit holes, and we begin to learn more about the dark side,
Researching how the weather pattern can cause a migraine,
Or,
How a child can go from a sweet angel to a devil in an instant because of the barometric pressure,
Since they cannot speak for themselves,
Who is willing to stand for them?
We know there are families out there struggling to understand,
Searching for answers,
Looking for ways to comfort their loved ones,
Making them find the light on this dark path,
Even though people stated that we are dumb,
We will never be “normal”,
The world will be against us, and we won’t have a voice,
To all of that I say they are wrong.
We do have more than a voice,
In fact, we have the movement of an army filled with hydrocephalus warriors!
Over the years the Western New York Hydrocephalus Walk has become family.
They have embraced me, and I feel empowered to be their voice,
I want to be their beacon of light,
The drive forward for change,
I want to be their Hydrocephalus Ambassador!
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