I'm Like You: Ricky Smith, Jr.

29-year-old Ricky Smith, Jr. has had bone marrow failure bone marrow failure: A condition that occurs when the bone marrow stops making enough healthy blood cells. The most common of these rare diseases are aplastic anemia, myelodysplastic syndromes (MDS) and paroxysmal nocturnal hemoglobinuria (PNH). Bone marrow failure can be acquired (begin any time in life) or can be… disease for half of his life, beginning with aplastic anemia aplastic anemia: (ay-PLASS-tik uh-NEE_mee-uh) A rare and serious condition in which the bone marrow fails to make enough blood cells - red blood cells, white blood cells, and platelets. The term aplastic is a Greek word meaning not to form. Anemia is a condition that happens when red blood cell count is low. Most… at the age of 14, followed by PNH when he was 23.
"I just wanted to live the normal life of a teenager," said Ricky. But it just wasn’t meant to be. When he was taken to the hospital to find out why he’d become so weak, he passed out because he had so little blood in his body.

The teenager who’d been so excited about high school and sports became angry and depressed as he struggled to understand his medical crisis.
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."

Ricky told us 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."

The outlook may have been grim at first, but Ricky’s prayers were answered. “I thank God my kidneys came back to function.”

Ricky’s treatment for aplastic anemia at Miami Childrens Hospital came fast. He was not so lucky when he needed treatment for PNH.
"With aplastic, they put me on cyclosporine cyclosporine: Cyclosporine is used along with antithymocyte globulin (ATG), another immunosuppressant, for treating aplastic anemia and some other forms of bone marrow failure. , they put me on prednisone prednisone: Prednisone a man-made version of a hormone produced naturally by the adrenal gland that can help reduce inflammation and stop allergic responses. It is prescribed when the body is not producing enough of this chemical on its own. How does it work? For PNH, it may be used to decrease… , 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."

The lack of early proper treatment for his PNH put Ricky in a "real dark space".
When he pulled himself out of it, he called AAMDSIF and got the information he needed along with help obtaining 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. Then they operated to put stents in his chest to relieve swelling in his head and neck caused by the clots, which has resolved the issue.

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."