TONY IS OFFICIALLY LISTED IN MIAMI !
FOR A MUCH NEEDED MULTI-ORGAN TRANSPLANT
Tony became officially listed after extensive testing as part of the evaluation process at the Miami Transplant Institute in Miami, Florida on August 7th, 2015. His current wait time of 2,190 days on the UNOS Waitlist (United Network of Organ Sharing) has also been transferred from the Children's Hospital of Pittsburgh to the hospital in Miami which is where his transplant will take place.
Tony was born with a rare intestinal disease known as Hirschsprung’s Disease and was diagnosed when he was only 6 days old. This disease has greatly impacted his life where he is not able to attend to school due to the medical devices and equipment that helps keep him alive. His life has somewhat been restricted from what most take for granted. He’s not been able to eat a full meal without becoming sick, he’s not able to swim or shower without having his central line become sick, he’s not able to attend school as he could become very sick from other kids and he cannot be active as he wants to be due to the nature of his illness.
At just 6 days old, Pediatric Surgeons had to removed the diseased bowel which was all of his colon and ⅓ of the distal ileum of his small intestine to save his life. The first 4 yrs of his life he spent ⅔ of it dealing with countless surgeries and lengthy admissions in many children’s hospitals that it was determined his quality of life would benefit greatly by having an abdominal transplant. The last 5 years he has been awaiting new life being on the transplant wait list at the UPMC Children’s Hosp. of Pittsburgh. However with their wait list too long, and statistics not what they used to be , both Tony’s parents, their pediatricians and their Insurance company have been pro-active in researching and consulting with other transplant centers to help Tony.
Tony’s family has remained intact throughout this 11 yr journey and have been advocating and caring for him on his behalf the moment he was diagnosed with this terrible disease to getting him the proper care he needs, even if it means they may have to temporarily move to the center that will do his transplant. Tony and his family of both parents , Stephen T. & Monica A. Forte along with their children and Tony’s older brothers Vincent 15, and Dominic 13 have faced many struggles that comes along when caring for a loved one with a life threatening illness.
They almost lost their home, Stephen had a very hard time finding employment after the company he had worked for almost 4 yrs let him go and home-schooling the children which keeps Monica home to tend to all of Tony’s medical needs as well as the needs of their other two children all the while keeping the family healthy as they await the transplant, which makes finding employment outside of the home difficult. But through it all, their unwavering faith, the dedication of their family and to that of Tony along with their postivity will help them make Tony’s transplant a success.Throughout Tony’s rough road right from infancy, Tony’s parents remained constant at his bedside taking turns whether it was surgery related or that of his lengthy admissions. They have learned all aspects of his care including Tony’s older brothers and will assist if needed.
However as with any major illness both Insurance and Medicaid will NOT cover any costs associated with transplant unless its surgery. This means all recuperation costs pre and post transplanted related are not covered. Tony and the family will need to remain close to the center while Tony recuperates. Weekly testing and monitoring of Tony is crucial in that the center will be able to see any early signs of possible rejection and will be able to aid Tony should that need arise. The Forte’s have been told that Tony’s recuperation is solely dependent on Tony’s health and will be very lengthy . They will have to remain at or near the center for a period of 6-12 months until the Dr’s give the Forte’s a green light that Tony is doing well to come home whether that means they stay in Florida or come back to PA.
Regardless, this family needs help to ensure that Tony succeeds and that they, the Forte’s as a family do. the Forte Family has set up a Special Needs Trust Fund in their son’s name : “The Antonio Forte Transplant Fund Trust”. This trust protects Tony from losing any SSI Disability and Medicaid benefits. All proceeds and donations made to the fund stay in the fund and get paid out only when Tony has medical appts such as monthly appts at Pittsburgh and now Miami or when he is need of medical attention outside of the state or when he has had a admission.
The Forte’s belong to several social media groups that focus on transplant and that of Pediatric and have looked at all options . Although Ronald McDonald House Charities is a wonderful organization for families whose children are receiving medical attention, these houses are not suitable for transplant recuperation purposes as with transplant patients, their immune systems are extremely fragile which would not make the RMHC a conducive environment for Tony. Therefore the family made a request that if anyone has a vacation home/a rental property/townhome/ RV or Motorhome for the temporary lodging of their family, they would greatly appreciate it and it could be meant as a tax write-off.
Whether it’s gas cards, airline miles, a rental of a vacation home/townhome/ RV or Motorhome to help with the temporary lodging or just monetary donations, your willingness and compassion to help their family in their time of need is greatly appreciated beyond any words that can be expressed! There is a website that his brothers Vincent and Dominic created to help share Tony’s story at www.aftft.com and or www.mybrothersbreadsllc.com
On these social media sites such as facebook, twitter or websites, the family is great in keeping those who know and love them updated as time and progression permits. Their son Dominic has a two motto's that state
“No donation is ever too small!”~ Dominic Forte & "At first if you don't succeed-then you aren't us"~ Dominic Forte
Please keep them all in your prayers!