While visiting his cousins in Virginia over the 4th of July holiday, our son Franklin started to have frequent dry hacking coughs and started breathing more rapidly than usual. We thought he was having some type of asthma attack and gave him albuterol breathing treatments. He seemed to get better so he was not taken to the hospital. When he returned home, he continued to have dry, hacking coughs and started to have bouts of vomiting. We thought it might have a stomach bug and/or cold and treated his symptoms. One morning a few days later, we noticed Franklin did not want to eat breakfast. This was very unusual as eating was one of Franklin’s favorite activities. When we examined him more closely, he was coughing almost constantly, profusely sweating, struggling to breathe. As we discovered later, these symptoms were all classic signs that our son was in late stages of heart failure. 

We took Franklin to Egleston Hospital for Children where within minutes he was whisked away to an ER bay and and examined by several doctors and nurses. The doctors ordered an echocardiogram which showed his ejection fraction was less than 20 percent. He was admitted into the cardiac ICU and given breathing support and meds to improve the function of his heart. My son weighed 209 lbs when he arrived. In two weeks he was down to 185 lbs. He was severely fluid overloaded. For a while, Franklin was almost back to his usual self while on these drugs. He regained his appetite and was a lot more energetic. We were hopeful that after a week or so that his heart function would return somewhat and he could be weaned from the IV meds and go home. His heart function did not improve after almost three weeks on the iv heart meds. They did an additional 4 echocardiograms over that time. While trying to transition to oral meds to try and go home, Franklin started having the same symptoms as he had when he first got admitted. As one of the doctors stated, he “declared himself” as not being able to survive without the iv heart drugs. Franklin needed a new heart.

In order to make conditions as normal as possible for the new heart, the doctors said that an LVAD device was needed. This would give the heart transplant the best chance to succeed. Currently, we are two days post op for the LVAD procedure. Franklin is doing very well in recovery. As soon as his lung pressures and other measurements are favorable, he will be placed on the heart transplant list. 

Our son Franklin is a 15-year-old teenager who has been diagnosed from a very young age with Fragile-X syndrome, an autism spectrum disorder. In spite of this diagnosis, Franklin has many interests and hobbies. He enjoys playing basketball, bowling, and playing video games. He enjoys walking the dogs around the neighborhood, swinging in the neighborhood playground, and going to the pool. His favorite movies are Disney’s “Cars”, “Free Willy”, and “Mr. Poppers Penguins”. He also loves collecting things associated with his favorite movies and has an extensive collection of characters from “Cars”, “Spongebob”, and “Thomas the tank engine” storylines.
Franklin is also a good student in school, getting on the honor roll and receiving school accolades for citizenship and friendliness at school. He is quite popular.

After his transplant, Franklin will require immunosuppressive drugs for the rest of his life. He will require frequent follow up visits.  There is only one worker in the family. Franklin is likely to have flare ups that will require more time lost from work to support him. This is why we have partnered with the Children’s Organ Transplant Association (COTA) for assistance with transplant-related expenses. Your support of COTA through a donation in Franklin’s honor would go a long way to helping with these costs.

The Children’s Organ Transplant Association (COTA) helps children and young adults who need a life-saving transplant by providing fundraising assistance and family support. COTA is the nation’s only fundraising organization solely dedicated to raising life-saving dollars in honor of transplant-needy children and young adults. 100% of each contribution made to COTA in honor of our patients helps meet transplant-related expenses. COTA’s services are free to our families, and gifts to COTA are tax deductible to the fullest extent of the law.