Let's Help Tony Get to the FINISH!
“How do you thank someone or many for saving the life of your child?” or "our sibling ?"
Is a saying we heard our mother, Monica repeat many times when discussing Tony’s story at many speaking engagements over the years prior to Tony's transplant. It's hard to believe its been 6 months since the surgery and Tony has been enjoying many "firsts". He's been able to eat full meals without becoming sick, he's been able to play, run and have fun without carrying a medical backpack, he's been able to dance in the rain, swim in a pool and get wet without fearing life threatening infections and sepsis that are high risk with having a central line. Tony has complete FREEDOM!
However we are always mindful of the family who gave him this freedom and the loss of their loved one to become heroes to our family and many others.To start, our brother after patiently waiting 6 years and 16 days was transplanted on August 23rd 2016. He received a multivisceral transplant where he received 4 organs, those organs came from a 12 yr old boy whose parents chose to donate his organs to save the lives of others while enduring the grief of losing a child. Without their selfless gift , our brother would still be waiting, waiting for the ability to live a somewhat normal life away from being tethered to an IV line in chest and a backpack that he would have to wear 18 hrs a day/ 7 days a week that would carry his nutrition. Although transplant is not a cure he has since been able to regain freedom he never knew.
From the time he was an infant 4 days old and after no stool, he was released from the maternity ward to come home. Our mom, Monica Forte gave birth to Tony by c-section (her third). Tony weighed in at 7lbs 5oz although a healthy weight, it wasn’t the weight of us previous births but he looked healthy. With mom and dad (Stephen T. Forte) it didn’t sit well with them that he didn’t stool and for several days. They contacted several specialists in the area to determine what the cause was only to have Tony sent to the Penn State Children’s Hospital in Hershey, PA by ambulance on his 6th day of life.Tony was properly diagnosed by the head of their Pediatric Surgery team in a 5 hour exploratory surgery which determined that he suffered from Total Colonic Hirschsprung’s Disease.
A very debilitating intestinal disease that affects the ganglion cells from developing (nerves of the intestine), over time after the Hirschsprung’s diseased bowel (his entire colon) and ⅓ of his distal ileum of his small intestine was removed, is where our parents literally became Tony’s RN team of keeping him safe, advocating for proper care in many a hospital, caring for his central lines, and ostomy care etc over the years. With no advancement in his health more studies indicated that he suffered from Complete Intestinal Hirschsprung’s which also affected his stomach.It was determined by our parents and our pediatrician in 2009 that Tony should be evaluated for a possible abdominal transplant and so they made their way out to the Children’s Hospital of Pittsburgh where after traveling to more centers for studies, it was confirmed that he would be a candidate for the transplant and was placed on the UNOS National wait list.
That wait came to end after waiting 6 years and 16 days in August 2016 where Tony took his own call and asked his GI attending with the Miami Transplant Institute “Do you have organs for me?” In her reply to him, her answer was “YES”.It was many miles, many follow-up clinic appts, our parents intuition with their willingness and ability to change transplant centers from Pittsburgh to Miami, along with the sacrifice of donor parents we don’t know that saved our brother and made Tony's donor a true HERO which is why Tony has endured.Now it all falls on Tony and WE need to help him get to the finish line of what has been a very long race! Tony has continued throughout his recuperation process to make strides, his determination and strong willpower keeps us his brothers and those who know him in awe. As one transplant surgeon stated “It’s a marathon!”
Day by day Tony is regaining strength, other than popcorn he has NO restrictions in what he can eat or the amount of what to eat. His ability to play is somewhat limited for now, NO contact sports as we have to protect his abdomen while he is still healing. He still wears an ostomy bag with hopes in the near future that he will be able to be reconnected. He is limited with his ability to go into crowded places, which is something we don’t miss as the routine hasn’t really changed from what we did prior to his transplant. Mom and Dad have done an impeccable job of keeping us and him free of germs and sickness as we waited for “the call” and now as he recuperates. If anything we stepped up a bit more now that his immune system is comprised due to the anti-rejection medications. What’s so great to see is how he is FREE!
FREE of the strings that kept him alive these past 11 yrs, FREE that he will be able to do what he wants and when he wants...It’s been amazing to witness his transformation just in these past 6 months.In the past 11 years our family has endured many great hurdles which has only strengthen us as a family which comes with having a loved one deal with a life threatening or critical illness. We have been blessed to have had the support of a special community by so many loving and compassionate people that we are truly humbled by all the cards and letters that keep coming to Tony and our family. When we were told we had to raise funds for the recuperation phase of Tony’s transplant along with the pre and now post transplant care because the insurance doesn’t cover it, we were devastated at hearing the excuberant amount.
Yet, it took a GREAT community of those we knew, have gotten to know and those we still have yet too meet to help us get this far, YOU all came and helped our brother by buying our homemade breads and cakes, setting up at fundraisers and hosting events over the years and for that we can't be more appreciative. Those funds we raised helped with the many thousands of miles to and from the transplant centers, getting him properly diagnosed at other centers, helped with medical expenses and co-pays that had to be paid out of pocket so Tony could get the meds and the medical care he needed that our parents set up a Special Needs Trust for Tony (the Antonio Forte Transplant Fund Trust) back in 2010 when he first became listed with Pittsburgh, those funds have been allocated every step of the way in getting Tony to this point, however those funds are now extremely tight and the fundraising somehow will have to continue. But we can’t do it alone and need your help!
The costs of the recuperation phase is adding up in lightening speed , the insurance now doesn’t want to pay Angel Med Flights for flying Tony to his team in Miami on the day of the transplant, Dad's employer changed prescription carriers and now the co-pays are higher on his life sustaining medicines that Tony will need for the rest of his life and a nutritional supplement that will aid Tony’s nutrition as he's recuperating is also being denied by the insurance along with the above mentioned recuperation costs that are not covered just to name a few. Tony’s motivation is and has always been to get home. He misses home and can't wait to get back there! We have been told we can remain near the hospital for an undetermined amount of time 6 mos to maybe a year, (we are currently starting on month number #6).
Tony has been progressing getting weaned off some of the medications and moved from weekly to bi-weekly labs to check anti-rejection levels, he still endures endoscopes to internally check how healthy the new organs are which includes an overnight stay in the hospital, maintaining his health & nutrition plus in case an emergency arises are all apart of the recuperation phase which solely depends on Tony and why he needs to remain close to the hospital.Although we are extremely grateful for the compassion of the RV company in donating the RV we have been living in while he recuperates, the campground (CB Smith Park & Campground) in Pembroke Pines still has a daily cost of $40/per nt, the gas, tolls, food and co-pays are NOT covered by any insurance which makes the need even greater.
Now that both Dominic and I are older and can comprehend much more then when we were younger, seeing our mom battle on the phone with the insurance company is disheartening when she still is fighting for the life of her child and will do whatever it takes. She will not stop. For all of our friends and loved ones who ask , "what can we do?", "how can we help?", we are answering with this appeal.
Please continue to help Tony on his road to recovery and crossing the finish line by easing the financial burden placed upon him in order to continue the fight for health. This financial burden is a constant distraction from healing which should be his only focus. Although transplant enables to extend Tony's life, transplantation is NOT a cure.Our brother Dominic has a saying "No donation is ever to small, but it can sure help in a BIG way!" We created this account to help raise money for his medical expenses so that Tony can get the best treatment possible for a speedy recovery.
All donations are greatly appreciated whether they are big or small. Anything helps! We thank you from the bottom of our hearts, we miss you all greatly and look forward to the day when we can finally get home and see so many of you that we love and miss so much. We are coming on the other side of 6 months . We are humbled by the continued support, thoughts, prayers and compassion you all have shown us over the years to now. To keep seeing the updates on how Tony’s progressing please visit Mom’s FB “Monica Walker Forte” page! To learn more about Tony please visit www.gofundme.com/Tony-Forte-he-s-our-brother