Fredericksburg, Virginia resident Johnny Boatman is a former national guardsman who had been in excellent physical condition all his life. That was until 2022 when he felt a sharp pain in his chest while working out at the gym. Johnny interviewed with ABC8News recently hoping that by telling his story he would bring awareness to others who have been diagnosed with the same rare and often fatal disease hereditary ATTR amyloidosis.
At this moment he is still waiting for a kidney and heart donor.
It’s All About Sharing
Lives can be saved by raising awareness.
Johnny and Quan, his wife, spoke to ABC8News on October 14th explaining that they formed a GoFundMe they call “Anyone With a Heart.” The couple have been waiting at VCU Health for 39 days for, in Quan’s words, their special miracle. Each time medevac makes a landing on the roof of the hospital they pray that is finally their special delivery of a kidney and heart for Johnny. The family lovingly call themselves “Team Boatman.” There is no doubt that they are all in this together.
About the Diagnosis
Dr. Keyur at VCU Health and a team of experts diagnosed Johnny’s condition as hereditary ATTR amyloidosis. The disease is caused by a protein that builds up and prevent organs from proper functioning. According to Dr. Shah, they are gradually learning more about hereditary amyloidosis. In addition to being inherited, it can also progress with age.
Symptoms include be fatigue, shortness of breath, or swelling. Notably, Dr. Shah commented that one out of four people who are recorded as seemingly dying of natural causes have died from amyloid accumulating in their heart. Dr. Shah also said that one out of 20 Black Americans carry the mutation which causes the disease. Quan and Johnny have just celebrated their 11th wedding anniversary.
They launched the awareness campaign with the help of some of their friends. At that point Quan became the spokesman for the group and said she wants to emphasize that donations are of great importance as they provide knowledge which as we know, provides power. Quan explained that when they finally learned about the disease it was almost too late.
When the doctors periodically examine him and ask how he is doing, his response is usually “We’re doing OK,” He wants people to know it’s the teamwork that counts. Quan and Johnny want to thank VCU Health, its staff, and Dr. Shah who are all navigating the couple through his treatment.
The Boatmans can be contacted for funding or organ donations through the “Anyone with a Heart” campaign at [email protected] and through its Facebook and Instagram pages.
