Help Heston Wayne's MEDICAL EXPENSE
Donation protected
Heston Wayne and his Momma are in Cincinnati to see a neurosurgeon as well as a team of doctors who are trying to determine the best course of treatment for the complex issues that he faces.
The newest of these is possible Chiari Malformation....in its simplest terms it means the spinal cord is tethered...that is only the most simplistic description...please google it for in depth explanation. For those of you who share my Heston Wayne's medical concerns you KNOW how much it costs to travel, to stay in housing such as a B and B and a hotel when room is not available in Ronald McDonald house which is the case right now. They are on a waiting list but the dollars earned at a 5k (to help pay any medical expenses not covered by insurance and to pay for the trip ) are slipping away too quickly.
You might wonder why I set the amount at $25000....in truth of should have set it even higher as they may be in Cincinnati three weeks or longer and we are concerned about where monies will come from to pay for such an extended stay. So please please share this post and donate if you are able to do so. And once again thank you.
Heston was diagnosed with Schwachman Diagmond Syndrome which has ravaged his body. He is in bone marrow failure and has had a gj tube placed (he gets a new one every three months) by which he receives his nourishment. My precious grandson requires 24/7 feeds on a feeding tube and his formula for said feeding tube is NOT COVERED BY INSURANCE. His body at present is failing to absorb food via his tube due to worsening motility issues .
Heston's daddy has a good job with insurance. He works 70+ hours a week and we pay our bills, send payments to the dr.'s,and buy groceries and what ever is left goes toward paying for his formula.
The new insurance year is also fast approaching and that means out of pocket and co pays are starting over which means the 12,000 out of pocket is coming .. That on top of co-pays, formula, monthly visits with nutrition (insurance doesn't pay the cost is 325 monthly) is all weighing heavy on the family .
Formula is Heston's life's blood without it he would surely .. Well let's not go there.
He is currently on 24/7 remote cardiac monitoring as he is having a hard time regulating a proper heart beat as a result of malnutrition he has several episodes a day he will most likely be having surgery at the first of the year to combat that .
His Momma says....
" He is so strong .. He tells me of his adventures on minecraft he tells me how one day he will meet all these little kids he watches on you tube kids.. How Dan TDM will one day see him in minecraft and come say hi .. How he is going to have a million you tube subscribers.. ( he makes his own videos daily )
He just lives .. He amazes me .. Just like Jay when he was younger .. He never felt sorry for himself ever.. Neither does Heston Wayne .. My boys are fierce and I am one extremely proud momma .. (Daddy is too but Momma is mushie soo ) "
This is our life .. And what an adventure it is ..
A boy and his dog ..
A family to be proud of..
A great support system..
A hard working man and awesome dad ..
Last but not least a pretty awesome older kid who has turned out to be an amazing young man..
There is so so much more to be thankful for.
I am just blessed to still be here to be thankful for what I have .."
As I mentioned, his condition is worsening. His need for a bone marrow transplant is becoming more critical. We need to find a match.
And now with the tube not getting through due to motility issues he has begun to lose weight again.
Please help. Share and donate if you can... and know how very thankful we are.
Just need to say that the dollars you see are dollars that have been used for Hess's care paying for expenses when he goes to the doctor, incidentals like tape needed for his gj tube, formula, and so on. We need so much more in an effort to get him back to Boston and to Atlanta if deemed necessary.
You can follow on facebook at the link given.....Angels are on the way to each of you....
www.facebook.com/Heston-Heroes-102503070150776/
The newest of these is possible Chiari Malformation....in its simplest terms it means the spinal cord is tethered...that is only the most simplistic description...please google it for in depth explanation. For those of you who share my Heston Wayne's medical concerns you KNOW how much it costs to travel, to stay in housing such as a B and B and a hotel when room is not available in Ronald McDonald house which is the case right now. They are on a waiting list but the dollars earned at a 5k (to help pay any medical expenses not covered by insurance and to pay for the trip ) are slipping away too quickly.
You might wonder why I set the amount at $25000....in truth of should have set it even higher as they may be in Cincinnati three weeks or longer and we are concerned about where monies will come from to pay for such an extended stay. So please please share this post and donate if you are able to do so. And once again thank you.
Heston was diagnosed with Schwachman Diagmond Syndrome which has ravaged his body. He is in bone marrow failure and has had a gj tube placed (he gets a new one every three months) by which he receives his nourishment. My precious grandson requires 24/7 feeds on a feeding tube and his formula for said feeding tube is NOT COVERED BY INSURANCE. His body at present is failing to absorb food via his tube due to worsening motility issues .
Heston's daddy has a good job with insurance. He works 70+ hours a week and we pay our bills, send payments to the dr.'s,and buy groceries and what ever is left goes toward paying for his formula.
The new insurance year is also fast approaching and that means out of pocket and co pays are starting over which means the 12,000 out of pocket is coming .. That on top of co-pays, formula, monthly visits with nutrition (insurance doesn't pay the cost is 325 monthly) is all weighing heavy on the family .
Formula is Heston's life's blood without it he would surely .. Well let's not go there.
He is currently on 24/7 remote cardiac monitoring as he is having a hard time regulating a proper heart beat as a result of malnutrition he has several episodes a day he will most likely be having surgery at the first of the year to combat that .
His Momma says....
" He is so strong .. He tells me of his adventures on minecraft he tells me how one day he will meet all these little kids he watches on you tube kids.. How Dan TDM will one day see him in minecraft and come say hi .. How he is going to have a million you tube subscribers.. ( he makes his own videos daily )
He just lives .. He amazes me .. Just like Jay when he was younger .. He never felt sorry for himself ever.. Neither does Heston Wayne .. My boys are fierce and I am one extremely proud momma .. (Daddy is too but Momma is mushie soo ) "
This is our life .. And what an adventure it is ..
A boy and his dog ..
A family to be proud of..
A great support system..
A hard working man and awesome dad ..
Last but not least a pretty awesome older kid who has turned out to be an amazing young man..
There is so so much more to be thankful for.
I am just blessed to still be here to be thankful for what I have .."
As I mentioned, his condition is worsening. His need for a bone marrow transplant is becoming more critical. We need to find a match.
And now with the tube not getting through due to motility issues he has begun to lose weight again.
Please help. Share and donate if you can... and know how very thankful we are.
Just need to say that the dollars you see are dollars that have been used for Hess's care paying for expenses when he goes to the doctor, incidentals like tape needed for his gj tube, formula, and so on. We need so much more in an effort to get him back to Boston and to Atlanta if deemed necessary.
You can follow on facebook at the link given.....Angels are on the way to each of you....
www.facebook.com/Heston-Heroes-102503070150776/
Organizer and beneficiary
Patricia Scott
Organizer
Hawthorne, FL
Stephanie McGillis
Beneficiary
