In November’s edition of our Newsletter, The Main Street Beat, we introduced readers to a little Disney Fan named Tony. We got acquainted with Tony’s story through Cast Member friend to TMSM, Michael. Tony has a rare medical condition, and looks to Disney to keep that extra positivity and magic going in his life throughout the year. Recently, Tony’s mother Monica contacted me to thank me for the write up about her son. I had asked her for more info on Tony, and here’s what she sent me:
Tony has been awaiting a life saving transplant for almost 4 yrs come June of 2014. At 6 days old he was diagnosed with Total Colonic Hirschsprung’s Disease, Pediatric Surgeons had no choice but to remove the diseased portion of bowel in hopes of salvaging the remaining. (They had to remove his entire colon and 1/3 of his small intestine.) Dr’s were hopeful that Tony’s remaining small intestine of less than 3ft with enough bowel rest could adapt enough to allow to absorb nutrients and grow. During the 1st 4 yrs of his life he lived by artificial means of nutritional support. Wearing a backpack that instead carrying school books carried his IV Nutrition and medical pumps.
Tony wears an ostomy bag for his waste, a GTube in his stomach fotr tube feeds when tolerated and a central venous cath implanted in his chest to allow I4 liters of 1 Gal. of IV Nutrition to be pumped 18 hrs a day , 7 days a week. Tony has never been able to attend school, eat a full meal, swim or have a bath in order to protect his IV Dressing, instead we sponge bath him, never had a sleepover or a piece of birthday cake without getting sick. Tony has been awaiting a multi-visceral transplant of a stomach, small & large intestine and liver transplant. While Tony was 3 yrs of age and living in and out of the Penn State Children’s Hospital in Hershey, PA. A nurse from Child Life came in and handed me a bunch of DVD’s, in the bunch was Pinocchio of which Tony chose. I not seeing it myself in years started to watch it. Now Tony was 3 , and in a Children’s Hospital to protect the kids from fall from the crib they were cage cribs. Tony instead of wearing a mobile backpack would be tethered to an IV Pole and machine.
When Pinocchio started singing “I’ve got no strings” Tony kept pointing to the TV and saying “I wanna be like him, Mommy”. From that moment on, Tony loves Pinocchio. The love between Gepetto and Pinocchio is one that reminds us today of Marlin and Nemo, and reminds us of my husband and the love he has for his son.
When we were able to travel with Tony and his brothers Vinny and Dominic for his Make-A-Wish trip in 2009, Cast Members asked us who Tony’s favorite Disney Character is? Instead of saying Mickey or an Iconic one… Tony said Pinocchio. With that Pinocchio came out and after sharing our that story any cast member within an earshot, would tear up. The night before we had to leave for home, we watched the beginning of “Wishes Fireworks” hearing Pinocchio ask to be a “real-boy just brought on more tears…. until just when the blue fairy asked for everyone to join together and wish , a call came from the transplant center where Tony is listed indicating that Tony would be placed on their list for transplant.
Once we got back from trip, Tony’s two older brothers at the time who were 9 and 7 years of age started putting together ideas and plans into how they would raise monies for his Special Needs Trust for his transplant. Since Vinny 13, and Dominic 11 have a business called ‘My Brother’s Breads, LLC.” where they bake 1lb homemade breads and cakes of which they sell just for a donation. They do many online events and have festivals in our community to help with donations and awareness.
The boys were instrumental in having the organization “Gift of Life” in our State of PA make Tony their poster child in helping them raise awareness about pediatric organization with billboards,posters and brochures along with commercials and radio spots.
Having a child with a life threatening or terminal illness can take a toll on everyone in the family. With all the medical attention that Tony needs, both my husband Stephen and myself have not been able to keep employment. We had family help in the first 4 years of Tony’s life, however that has since stopped. Our home is facing foreclosure. No one will hire my husband in regards to our son. Employers are not willing to understand the needs one has too take when a child is critically ill. Tony has unpredictable admissions due to illness, many appts to the numerous teams of Dr’s (Gastroenterology, Hematology, Radiology, Surgery and Transplant) of the UPMC Children’s Hospital of Pittsburgh, PA. Our son Tony has monthly appts and then every 3 mos with these teams. We live 4 hrs away in Lancaster, PA. Our travel to and from the hospital, tolls , gas and meals are not covered by any insurance.
Tony’s recuperation after transplant will not be covered either.Tony will have to remain near the hospital for 6 mos to 1 yr after transplant. Currently, we have to be on the ready at anytime once that call comes saying Tony will receive his transplant. We home-school the boys to help keep Tony and everyone healthy as we wait. And although we can’t wait for that call, we will also mourn the loss of a child that the donor family will lose in saving our child’s life. Tony can also have many complications after transplant such as PTLD (Post Transplant Lymphoproliferative Disorder ) that is a form of cancer once the immune system is comprised, which he would require chemotherapy and the possibility of losing the new transplant which would incur our length of stay longer than expected.
Raising $1MM -2MM is no easy task, however when we met Michael, he started the process by sharing our story and getting out to anyone he thought might be able to help the boys. The boys have a Christmas Wish Campaign where they ask those on Facebook to donate “Ten for Tony” and post on their walls asking all of their FACEBOOK Friends to donate $10. Once the friend donates $10 , they in turn re-post and have that friend ask and so on.
The boys created two websites www.aftft.com and www.mybrothersbreadsllc.com and they have Facebook Pages to help advertise their fundraisers “Tony’s Helpers”, “Tony’s Challenge”, “My Brother’s Breads”,”Antonio Forte Transplant Fund Trust”.
Tony’s dream is to move and be close to Disney so he can visit whenever he wants. Disney keeps us having hope where Tony can visit along with the boys where they can forget hospital life and where we can have countless memories filled with happiness, like a squirrel gathering nuts… A quote my Dominic said. We are planning on it, right now with some complications that Tony endured back in September that plan on moving is on hold.
The boys goal and dream with “My Brother’s Breads,LLC” is to raise funds for the needs of organizations that has helped our family and those families with children who have life threatening or terminal illness: Ronald McDonald House Charities,Children’s Miracle Network, Make-A-Wish,Gift of Life and Give Kids the World.
Monica, Stephen, Vinny 13, Dominic 11 and Tony Forte 8.
Any donations can be made via PAYPAL to www.aftft.com
or checks can be made payable to:
Antonio Forte Transplant Fund Trust
Fed Tax Id: 27-6763548
Thank you Monica for sharing the story of your sweet boy Tony, and how Disney has helped get you through the rough times. Thank you also to our friend Michael for introducing us to the family. If you could share this information with others, that would be a great way to put forward a Random Act of Kindness! Thanks Everyone!