Photo source: Miami Herald
4-year-old Jovon Moss was diagnosed with X-linked Lymphoproliferative Syndrome, a rare disorder of the immune system that led him to being taken back and forth to the hospital since his 3rd birthday.
Jovon’s journey began in September of last year, when his mother, Brittany Fluellen, first began to notice that he was frequently coughing and feeling tired. “When he was first sick and he wasn’t doing anything and he wasn’t acting like his normal self; that’s when I was like 'No, there’s something wrong’. It’s not normal for a 3-year-old to just be laying around and not playing. He wasn’t eating” said Fluellen. She rushed him to the hospital and the doctors that examined him expressed that he most likely had a virus. However, the virus did not go away but rather it grew more severe.
Misdiagnosis after misdiagnosis
A week later, Jovon’s mother brought him back to the hospital, where he was admitted in the ICU with Epstein-Barr virus, a common virus that triggers infectious mononucleosis or ‘mono’. He was in a coma for several weeks and began to suffer from seizure attacks. His mother recalls seeing Jovon’s petite body shaking in the hospital bed and speeding out into the hallway, screaming for help. “Then, he couldn't breathe. He was intubated twice” she said. After a few weeks of undergoing rehabilitation therapy, Jovon was discharged from the hospital in November. Still, he did not seem to feel better and his mother expressed that he seemed exhausted most of the time.
At the time, what his mother did not know was that Jovon’s yet-to-be discovered genetic disorder meant that his body’s immune system could not properly fight off the Epstein-Barr virus. He kept losing weight and eventually developed pneumonia. “He was just staring off into space; he wouldn’t focus his eyes on anything” said Fluellen. In January, Jovon was re-admitted to the hospital in order to treat his pneumonia. Towards the end of March, his symptoms began to grow more severe, causing a large tumor in his neck to form. His mother feared that she would lose her only son and at such a young age. After undergoing several immune tests, doctors would diagnose Jovon with stage 2 lymphoma and X-linked lymphoproliferative syndrome – a one-in-a-million genetic disorder that made him susceptible to particular types of infections. “That's the reason he got all of this” said Gary Kleiner, pediatric immunologist at the Sylvester pediatric clinic and Jovon's doctor.
Jovon begins chemotherapy
At Sylvester’s pediatric clinic, Jovon was quickly put on a 4 month chemotherapy program in order to treat his tumor. Dr. Kleiner requested and was granted permission from the FDA to conduct a trial run of a new stem cell therapy on Jovon, which was intended to supply him with additional T-cells to fight off any infections.
In August, by the time Jovon’s chemotherapy sessions had come to an end, his mother stated that her son began to gain weight again and return to his normal self. After chemotherapy, the immunoglobulin therapy that he received did not stop him from racing through the Sylvester clinic on Halloween, in a costume imitating his favorite character from comic books, the Flash. The nurses quickly followed behind him so that he would not trip on his IV stand, which was implanted in his left chest. “It’s nice to see him back in a Halloween costume and back to himself – playful. We have a long way to go with a stem cell transplant but we’ve made it so far, so good, and I’m thrilled that he’s doing so well now” said Dr. Kleiner. His mother stated that “when he was sick he wasn’t able to do anything. He didn’t have the energy to do anything. The energy that he has now, no. He has a lot of energy right now. He’s making up for the lost time.”
Dr. Kleiner stated that Jovon’s cancer is in remission and the next approach in his treatment is for him to undergo bone marrow transplant. His mother is hopeful that the transplant will be able to improve his health and she looks forward to a time when hospital visits will become ancient history for Jovon. “I still cry seeing him now. We’ll be glad when it’s over soon” said Fluellen.
Stem cell therapy is quickly advancing in the world of medicine by offering hope to treatment of complex diseases. Current studies are showing great promise; however, findings still have a long way to go. Scientists now have concrete evidence that every disease originates in specific cells – the first cell of a human is the stem cell. “Stem cells are immature cells, and can regenerate into the type of cell that is needed to repair tissue when injected into an injured area. There are several different kinds of stem cells. Mesenchymal Stem Cells (MSCs) are found in bone marrow and fat tissue, and have the strongest potential to repair muscle, bone, joint and soft tissue injuries.These cells have the ability to self-replicate, reduce inflammation and help the body regenerate the lost tissue in the injured area” said Dr. Trevor Bullock, specialist in Sports Medicine at the Northshore Orthopaedic Institute.
As a result, most scientists believe that the key to uncovering a potential cure for any disease lies within the cells themselves. “After adequate local anesthesia, stem cells are extracted from the pelvis bone and/or fat tissue, and then concentrated in a centrifuge. Using an ultrasound for targeted placement, the sample is then injected at the site of injury. It's very similar to a steroid injection. All of this is done in the office in one visit and takes a little more than an hour to perform. Remember that the FDA allows physicians to inject patients with their own stem cells as long as the cells, or the tissue the cells are extracted from, meet specific criteria, including "minimal manipulation," and are intended to perform their normal basic function” said Dr. Bullock.
New techniques are being tested
A new revolutionary technique involving stem cell therapy that could bring brain dead patients back to life is currently being tested. While several specialists believe this process is rather impossible, a few are hopeful of its possibilities. Similarly, another technique is showing promise in halting or reversing the symptoms of MS, allowing patients to recover mobility. “For a life-long progressive disease like MS with few treatment options this is really exciting data. It offers the hope of having a long-lasting treatment which may halt disease progression – though, again, this is a very invasive therapy and not without risks. Still I would consider it a breakthrough therapy, and the clinical group and the patients should be congratulated for this success” said Dr. Stephen Minger, a stem cell biologist.
Whether stem cell therapy is effective or trustworthy, it does seem to have a bright future ahead – The case of Jovon Moss is merely one such example. “Active research is currently being performed all across the world on stem cell treatments for various medical and orthopedic conditions. As more data is gathered, physicians will determine how best to optimize results for the best outcome” said Dr. Bullock. In fact, a few companies have already begun investing a lot of time, effort, and money into speeding up the further development of stem cell therapy as a possible new treatment alternative.