Ricky Smith, Jr. Battles a One-Two Punch of Aplastic Anemia and PNH

29-year-old Ricky Smith, Jr. has had bone marrow failure disease for half of his life, beginning with aplastic anemia at the age of 14, followed by PNH when he was 23.

It took doctors a year to get Ricky’s aplastic anemia under control.

His wife Reyneisha puts it this way. “Not only did he question his parents and the doctors, he questioned God and said ‘Why do I have to go through this?’ He explained to me that if the disease was going to cost him his life, he’d rather be gone than deal with it.”

The teenager who’d been so excited about high school and sports became angry and depressed as he struggled to understand his medical crisis. Ricky told AAMDSIF that it took a long time to accept responsibility for taking care of his own health – 9 years, to be exact, which was when he got PNH. “That's when everything in my life went downhill. Both of my kidneys went into failure.”

Initial Treatment
Ricky’s treatment for aplastic anemia at Miami Children’s’ Hospital came fast. He was not so lucky when he needed treatment for PNH.

“With aplastic anemia, they put me on cyclosporine, on prednisone, and I got the ATG shots. It seemed I was doing better, but then I had a relapse,” said Ricky. He was repeatedly admitted to the hospital, once spending an entire summer confined to his hospital bed. “The doctors wouldn’t even let me walk down the hall or go outside.”

Finding treatment for his PNH was a lot harder. His insurance refused to cover his care with the doctor he’d found who was experienced with this disease. “They put me with another doctor who was in network with them, but he didn't know anything about PNH. He only knew about cancer.”

An Education Follows
The lack of early proper treatment for his PNH put Ricky in a “really dark space“.  When he pulled himself out of it, he called AAMDSIF and got the information he needed along with help obtaining eculizumab (Soliris®). “When I got that, things started to take a turn and the next year, I ended up meeting my wife.”

Just recently, Ricky learned that he had chronic blood clots, but no one could figure out how long he’d them because he had never been tested for them. He got an education about this very dangerous problem from doctors at the Mayo Clinic in Jacksonville, Florida, where they discovered clots in his chest around his port, in his legs and in his head. They operated to put stents in his chest to relieve swelling in his head and neck caused by the clots, which resolved the issue.

Support Is Essential
As a teenage patient, Ricky’s greatest comfort came from spending time with God and thinking about what was really important to him, like being with his family instead of taking them for granted.  “The main thing is the mind, and if you let your illness take control of your mind, then how can you help yourself get better?” This realization led Ricky to grow up fast.

While his family was his primary pillar of support during his first bout of bone marrow failure, his wife is now his rock. “When we came together as one, his sickness became my sickness,” says Reyneisha. “And I think that in itself gave him life, where he lives every single day and acknowledges the birds and the bees – he loves the squirrels – and his spirit, because of it, is more beautiful to me than anyone I've ever imagined.”  

Together, Ricky and Reyneisha have chosen a purpose-driven life of health and wellness. “We’ve made changes so that we eat better. We make sure that our mindset is always well and healthy. And we make sure we continue to pray and seek God's favor because, at the end of the day, God's in control.”