***** Please Note***** This site is NOT maintained by Jay .. This is my page FOR him,to tell his story.He and others like him , need all the prayers and well wishes they can get!!
Jay is 12 years old and quite the fighter ..
Jay has been battling what was first thought to be "just" an autoimmune disease called Behcets Snydrome. He was diagnosed 6 years ago.
Behcets in and of itself can be a very insidious disease.
Symptoms include:
Skin Lesions
Oral Lesions
Eye inflammation /that can lead to blindness in some cases (Jay has Lost 45% of his right retina and eye site)
Brain Lesions
Blood Clots/ that can lead to strokes
Central Nervous System /Memory loss, confusion, mood and behavior changes
Digestive Tract/Gastric Paresis
Lung Issues/aneurysms
Vasculitis /Vasculitis is an inflammation of your blood vessels, which include your veins, arteries and capillaries. Also called angiitis, vasculitis causes changes in the walls of your blood vessels, such as thickening, weakening, narrowing and scarring
Arthritis
This is just to name a few ..
I mention these symptoms because, all listed above Jay suffers from in one way or another.
But is doesn't stop there ..
Jay has positive neutrophil antibodies: In short he is in a chronic constant state of Neutropenia.
Now, Neutropenia refers to the presence of abnormally low levels of neutrophils in the circulating blood. Neutrophils are a specific kind of white blood cell that help prevent and fight infections. The most common reason that cancer patients experience neutropenia is as a side effect of chemotherapy.
Here is the thing .. Even when Jay isn't on Chemo
He is is still in a constant state of Neutropenia.
In short his counts are always low. On bad days his ANC ( absolute Neutrophil count) sits at about 99/125mm. Anything below 500mm is considered low and puts the body in danger of infection. He has never however ever been above 500mm.
As a result his disease has become systemic, his body, tired.. So, what started as "just" an autoimmune disease has turned into this horrible disease we call CANCER..
He suffers from Vasculitis of the heart , which has lead to early HF(Heart Failure). The stays in the hospital, to many to count. The living at the Ronald McDonald House for a year, only to be told to go home and let him be ..
Let him be a Kid. Let him live as normal of a life as possible.. To live one day at a time.
Normal what is that ??
Normal is being able to go to school , to play with others, to let the world see the face of a beautiful boy.Who often has to hide behind a mask to keep him out of harms way.
Normal is to not live in pain on a daily basis, to be able to sleep without oxygen because your body and mind forget to breath.
All of which he cannot do .. Normal .. Hmmm interesting word.
I tell his story because to look at pictures of Jay you see a NORMAL looking boy, you don't see his pain, his suffering, and you won't.. For Jay it IS his life and he has come to accept it, much more than I have ..
Jay was given a terminal diagnosis, almost two years ago and we were told not to expect him to live past the age of 13, can I just say there is wayyyyyyyy to much fight in this kid to give up that easily!!
His and many faces you see on this website are faces of CANCER. There is no "look". Because these precious children are not bald doesn't mean they are not sick .. That old saying "you can't judge a book by it's cover", yeah my son and many like him...
I tell his story not for pitty...This is not POOR Jay.. This is not poor me for that matter . We have faith, and a strong friend and family support system, and we are here to tell others that it will be ok .. We live one day at a time and we will keep on keepin on .. Just lift Jay and all others like him up to the Lord and ask God to watch over our Children..
Peace Be with you ...
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