So, if you're reading this then that means attempt number 1,495 was semi-coherent enough to paint the picture....
The part that makes all of this that much harder to dictate is my brain's inability to understand why it's all happening to a 7 year old little boy who is always smiling regardless of what his body, doctors, or procedures are putting him through. If you were to catch a glimpse of the photos that didn't involve the hospital tubing then you'd have a really hard time in believing that something is actually happening to JT that was very serious.
JT was born with a rare disease called Fanconi anemia.
Fanconi anemia is a disease that affects many parts of the body. People who have this condition may have bone marrow failure, organ defects, and an increased risk of certain cancers.
The major function of bone marrow is to produce new blood cells. These include red blood cells, which carry oxygen to the body's tissue, white blood cells, which fight infections, and platelets, which are necessary for normal blood clotting. 90% of people with FA have impaired bone marrow function that leads to extreme fatigue, frequent infections, and clotting problems. FA has an increased risk of developing a cancer of blood forming cells in the bone marrow called acute myeloid leukemia.
Everything that you just read is currently happening to a 7 year old....
Along with the above, JT has been on a feeding tube his entire life. This is to not only ensure that he's eating but that his body is getting enough of the good stuff to maintain his weight.
The rarity of this disease has made the treatment options extremely slim. However, Sloan Kettering in Manhattan specializes in this disease. So this June JT and his family(mom, dad and sisters) will be moving to Manhattan where he will undergo a bone marrow transplant followed by 3 months of daily treatments including chemo therapy.
This GoFundMe page was started because no parent should have to choose whether to be in the hospital with their son who is undergoing life altering procedures or several hours south trying to keep their mental wits about them enough to struggle through a day of work just so they don't lose what they have here at home.
A collective effort by all reading this, in any amount that you're able to give, will ensure that MOM, DAD and SISTER's are ALL able to be in NY with JT while he continues to do what he's done since day 1.....smile through everything that this is throwing at him.
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