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"Ten For Tony!"

with Antonio Forte Transplant Fund Trust
This campaign will expire at
on .
To date
$1,235
Expired
Tilted at [?] $1,200
"Ten For Tony!"
Monica Forte started the campaign

Our 7 year old brother Tony Forte looks like any normal kid wearing a backpack heading off to school. But imagine that the backpack you carry, carries your IV Nutrition along with a home pump that you need to carry with you for 18 hrs a day, 7 days a week to survive in order to stay out of the hospital and not tethered to an IV Pole. That's exactly what our brother has had to carry with him since he was 6 days old,whether he was learning to crawl, learning to walk and be able to grow he was never without his backpack. Tony has been waiting for a life saving transplant for almost 3 years, that will one day soon allow him to be free of his strings just like the fictional character of "Pinocchio"  and to become a "real boy". 

Tony was born with a debilitating intestinal disease known as Total Colonic Hirschsprung's Disease. The gangelion cells that help aid the peristalsis function of moving nutrients and waste through the intestinal tract to be absorbed and expelled did not develop causing Tony severe abdominal distention/bilious vomiting/and not having the ability to stool, alerting our parents after he was discharged from the hospital where he was born ,that something was terribly wrong when he had not stooled in 4 days and the doc's allowed him to come home. At day 6 of his birth with no one telling our parents what was wrong with Tony and after having specialists say to them everything was fine... Our parents went with their gut instinct that something was wrong which is what has saved Tony's life. When he was taken to the Penn State Children's Hospital in Hershey, PA and after repeat studies the head of Pediatric Surgery, Dr. Robert E. Cilley took Tony immediately into surgery , and after 6 painstaking long hours, Tony was now recuperating for his life in the NICU. Dr. Cilley  explained to our parents that he had found what was wrong with Tony,it was Total Colonic Hirschsprung's Disease and they as parents would have to learn and care for him medically for his survival, Dr. Cilley's words to them was " Tony is going to need a lot of dedicated love".They became nurses overnight learning and caring about all of Tony's needs..such as Stomal Therapy caring for his Ostomy Bag that needs changing every 3 days, preparing his IV nutrition and Flush his lines in a sterile process,caring for his weekly dressing changes on his chest, documenting his In's and Outputs, staying with him throughout all of his countless lengthy admissions and surgeries...and making his Themed Prince Nursery into a make shift hospital room, that would house all of medical supplies as well as Mini- Fridge that keeps his TPN ( Total Parenteral Nutrition) and syringes cold. 

At the age of 2 after trying to manage his nutrition- it became clear that Tony was a severe case of the disease and the decision was made to remove all of the diseased bowel which included all of his colon and 1/3 of his lower small intestine,leaving just 2-3 ft of small intestine that over the years was not healthy enough for Tony to survive without artificial means.

Life for Tony has not been easy. From the time he was a baby he has been restricted to a very ridged diet with no freedom to have whatever he wants when he feels hungry. Many times he would become violently ill if he got into something that are parents knew would make him sick. As brothers' we sometimes had to eat in our bedroom or when admitted our parents would eat in their bathroom so that Tony wouldn't have too see us eat as it would make him angry that he couldn't. In order for him to survive because his gut couldn't do it on its own, he was required to have IV Nutrition that feeds him 18 hrs a day/7 days a week all of his nutrients and electrolytes which is  pumped by a home pump and is tunneled into his chest so he could grow and thrive. He also had to use a GTube that also had pump that would feed his stomach an elemental formula and because his colon was removed, he has to wear an ostomy bag to collect all fecal waste which is emptied and measured by our parents.He would have to stay many days and months from home recuperating at the Children's Hospital over many holidays and birthdays with either Mom or Dad caring for him, while the other would care for myself and our brother Dominic, we were only 4 and 2 years of age when Tony was born. With all of the medical needs of Tony, he has never entered a classroom, has not been to any sleepovers, has not been able to swim, has not been able to his eat own birthday cake and has never lived his life without his backpack or his hospital. We too were limited on what we were able to do outside of school. Our parents were never really able to plan to far in advance for fear that Tony could get sick and would need to be close to his hospital. It has been hard since Tony's birth for our parents to find suitable employment, not many employers are willing to hire parents of child with life threatening illnesses because of the needs of the child that is sick.

In Oct 2009 at the age of 4, it was decided that Tony can have further complications such a liver failure and loss of IV Access since his central line can and is at always at risk for a sepsis line infection which needs immediate medical attention and the longer he waits with the need of his IV Nutrition increasing as he grows the risk of liver failure is more of a concern, that he was placed on the transplant list of the UPMC Children's Hospital in Pittsburgh who performs Intestinal and Digestive Transplants. It has also been determined that due to the lack of the remaining small intestine not being healthy and lacks the motility for digestion that his stomach isn't either, therefore once a donor of a child is found for Tony he will undergo a stomach, full intestinal transplant of (small and large) and the longer he waits a liver as well.

Tony along with us are all home-schooled in order to keep Tony healthy. Both Dominic 10 and myself Vinny 12 have been fundraising for our brother for the past 2 years. The costs of his recuperation, future medical expenses and medications are not all covered by his medical assistance in the State of Pennsylvania or any private insurance company . Therefore we have set up a Special Needs Trust through the PNC Bank that will provide for his everyday expenses that Medicaid will NOT cover such as our need to temporarily re-locate to Pittsburgh for 6-12mos, travel back and forth to the transplant facility,medications that might not be covered and the possibility of re-listment should the transplant fail of other medical needs arise.

We have created a website at www.aftft.com where anyone can read more about Tony , learn about upcoming fundraisers or share their experiences about organ transplant on our comment page. We also have setup Facebook Pages " Tony's Helpers" ," Tony's Challenge" and "Antonio Transplant Trust Fund" and Twitter at "4tonyschallenge" .Our goal is to raise at least $1 million to 2 million dollars.... He's our brother and we can't imagine our life without him. Please help us, help him ! and share this among your friends and family.


 

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Congratulations to everyone!
The campaign was a success. A big thanks to all our contributors.
$1,235.00
2 new contributions
Charlie Beecherl
Charlie
Beecherl
Angelle Wolf
Angelle
Wolf
$1,220.00
Whitney Evelyn Lambert
The campaign has tilted!
Whitney just made this thing happen. Awesome.
6 new contributions
Chris Teachworth
Chris
Teachworth
Sandra Brownrigg
Sandra
Brownrigg
Steve Crowley
Steve
Crowley
William LaMastus
William
LaMastus
Fang-Yu Lin
Fang-Yu
Lin
Sezhian GK
Sezhian
GK
$1,030.00
8 new contributions
Kha Hoang
Kha
Hoang
Frank Lee
Frank
Lee
Peter Edwards
Peter
Edwards
A A
A
A
Brian Hoopes
Brian
Hoopes
Stephanie Shupe
Stephanie
Shupe
Naveed Massjouni
Naveed
Massjouni
Rachel Chuang
Rachel
Chuang
$900.00
8 new contributions
Matt Williams
Matt
Williams
Shawn Arnwine
Shawn
Arnwine
Chris Maccaro
Chris
Maccaro
kevin doherty
kevin
doherty
Henry Schneider
Henry
Schneider
William Wolf
William
Wolf
Kamal Jaganathan
Kamal
Jaganathan
Diego Bernardo
Diego
Bernardo
$465.00
8 new contributions
Angela Chang
Angela
Chang
Paris Patton
Paris
Patton
H Y
H
Y
Moritz Viehweger
Moritz
Viehweger
Thomas Farley
Thomas
Farley
William Bonde
William
Bonde
Khaled Hussein
Khaled
Hussein
mike hammer
mike
hammer
$295.00
Thank you to our early contributors!
STARTED!

Campaign Description:

Our 7 year old brother Tony Forte looks like any normal kid wearing a backpack heading off to school. But imagine that the backpack you carry, carries your IV Nutrition along with a home pump that you need to carry with you for 18 hrs a day, 7 days a week to survive in order to stay out of the hospital and not tethered to an IV Pole. That's exactly what our brother has had to carry with him since he was 6 days old,whether he was learning to crawl, learning to walk and be able to grow he was never without his backpack. Tony has been waiting for a life saving transplant for almost 3 years, that will one day soon allow him to be free of his strings just like the fictional character of "Pinocchio"  and to become a "real boy". 

Tony was born with a debilitating intestinal disease known as Total Colonic Hirschsprung's Disease. The gangelion cells that help aid the peristalsis function of moving nutrients and waste through the intestinal tract to be absorbed and expelled did not develop causing Tony severe abdominal distention/bilious vomiting/and not having the ability to stool, alerting our parents after he was discharged from the hospital where he was born ,that something was terribly wrong when he had not stooled in 4 days and the doc's allowed him to come home. At day 6 of his birth with no one telling our parents what was wrong with Tony and after having specialists say to them everything was fine... Our parents went with their gut instinct that something was wrong which is what has saved Tony's life. When he was taken to the Penn State Children's Hospital in Hershey, PA and after repeat studies the head of Pediatric Surgery, Dr. Robert E. Cilley took Tony immediately into surgery , and after 6 painstaking long hours, Tony was now recuperating for his life in the NICU. Dr. Cilley  explained to our parents that he had found what was wrong with Tony,it was Total Colonic Hirschsprung's Disease and they as parents would have to learn and care for him medically for his survival, Dr. Cilley's words to them was " Tony is going to need a lot of dedicated love".They became nurses overnight learning and caring about all of Tony's needs..such as Stomal Therapy caring for his Ostomy Bag that needs changing every 3 days, preparing his IV nutrition and Flush his lines in a sterile process,caring for his weekly dressing changes on his chest, documenting his In's and Outputs, staying with him throughout all of his countless lengthy admissions and surgeries...and making his Themed Prince Nursery into a make shift hospital room, that would house all of medical supplies as well as Mini- Fridge that keeps his TPN ( Total Parenteral Nutrition) and syringes cold. 

At the age of 2 after trying to manage his nutrition- it became clear that Tony was a severe case of the disease and the decision was made to remove all of the diseased bowel which included all of his colon and 1/3 of his lower small intestine,leaving just 2-3 ft of small intestine that over the years was not healthy enough for Tony to survive without artificial means.

Life for Tony has not been easy. From the time he was a baby he has been restricted to a very ridged diet with no freedom to have whatever he wants when he feels hungry. Many times he would become violently ill if he got into something that are parents knew would make him sick. As brothers' we sometimes had to eat in our bedroom or when admitted our parents would eat in their bathroom so that Tony wouldn't have too see us eat as it would make him angry that he couldn't. In order for him to survive because his gut couldn't do it on its own, he was required to have IV Nutrition that feeds him 18 hrs a day/7 days a week all of his nutrients and electrolytes which is  pumped by a home pump and is tunneled into his chest so he could grow and thrive. He also had to use a GTube that also had pump that would feed his stomach an elemental formula and because his colon was removed, he has to wear an ostomy bag to collect all fecal waste which is emptied and measured by our parents.He would have to stay many days and months from home recuperating at the Children's Hospital over many holidays and birthdays with either Mom or Dad caring for him, while the other would care for myself and our brother Dominic, we were only 4 and 2 years of age when Tony was born. With all of the medical needs of Tony, he has never entered a classroom, has not been to any sleepovers, has not been able to swim, has not been able to his eat own birthday cake and has never lived his life without his backpack or his hospital. We too were limited on what we were able to do outside of school. Our parents were never really able to plan to far in advance for fear that Tony could get sick and would need to be close to his hospital. It has been hard since Tony's birth for our parents to find suitable employment, not many employers are willing to hire parents of child with life threatening illnesses because of the needs of the child that is sick.

In Oct 2009 at the age of 4, it was decided that Tony can have further complications such a liver failure and loss of IV Access since his central line can and is at always at risk for a sepsis line infection which needs immediate medical attention and the longer he waits with the need of his IV Nutrition increasing as he grows the risk of liver failure is more of a concern, that he was placed on the transplant list of the UPMC Children's Hospital in Pittsburgh who performs Intestinal and Digestive Transplants. It has also been determined that due to the lack of the remaining small intestine not being healthy and lacks the motility for digestion that his stomach isn't either, therefore once a donor of a child is found for Tony he will undergo a stomach, full intestinal transplant of (small and large) and the longer he waits a liver as well.

Tony along with us are all home-schooled in order to keep Tony healthy. Both Dominic 10 and myself Vinny 12 have been fundraising for our brother for the past 2 years. The costs of his recuperation, future medical expenses and medications are not all covered by his medical assistance in the State of Pennsylvania or any private insurance company . Therefore we have set up a Special Needs Trust through the PNC Bank that will provide for his everyday expenses that Medicaid will NOT cover such as our need to temporarily re-locate to Pittsburgh for 6-12mos, travel back and forth to the transplant facility,medications that might not be covered and the possibility of re-listment should the transplant fail of other medical needs arise.

We have created a website at www.aftft.com where anyone can read more about Tony , learn about upcoming fundraisers or share their experiences about organ transplant on our comment page. We also have setup Facebook Pages " Tony's Helpers" ," Tony's Challenge" and "Antonio Transplant Trust Fund" and Twitter at "4tonyschallenge" .Our goal is to raise at least $1 million to 2 million dollars.... He's our brother and we can't imagine our life without him. Please help us, help him ! and share this among your friends and family.


 

 
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