It was over a year ago when Dovi and Dina Meles received the devastating news that their son, Rafi, suffered from a life-threatening illness, XLP, and that his best chances for survival were through a bone-marrow transplant. X-linked lymphoproliferative syndrome (XLP), or Duncan’s syndrome, is a rare genetic condition where the immune system does not work properly.
“This was a sequence of little miracles that add up to a big miracle,” is how Dovi explains the last year.
The first miracle was the fact that the disease was identified early on, when Rafi was still pre-symptomatic, and before any real symptoms set in that might have made the outcome irreversible. XLP is generally diagnosed once it’s too late, and the diagnosis is grim.
Another major miracle was not only that Rafi’s two younger brothers were not carriers of the disease, but that his youngest brother was an exact match to be his bone-marrow donor. That development set the course for the transplant to move at a more rapid pace. “These were not easy decisions—these aren’t decisions any parent should ever have to make or go through or think about,” Dovi said.
Then, Dovi explains, having access to a high level of healthcare was another miracle. With a team of doctors from Children’s Hospital of Philadelphia (CHOP) on top of Rafi’s every move, they were able to carefully monitor him, keep him safe and relatively stable for the days and months that the family suffered through their ordeal.
The bone-marrow transplant took place on Simchat Torah. Rafi had already been in the hospital since the first day of Sukkot in order to prepare him for the procedure. He remained there for several weeks after the surgery with his mother, Dina, while Dovi stayed home with his two younger sons. Rafi left the hospital on October 27.
“The reality as of today is looking like he’s going to be arguably cured of the disease,” Dovi shares. Naturally, with a diagnosis of this type, Rafi will be monitored his whole life for any short- and long-term complications, but many of the short-term complications, which tend to show up between the first 30-60 days, are now, thankfully, in the past.
Dina and Dovi were acutely aware of the long, unpredictable and challenging road that comes with transplants. After three months of relative quiet following his transplant, Rafi was brought to the emergency room for the first time since his operation and ended up returning on an almost weekly basis for about the next two months. Indeed, Dina and Dovi were told that there would be down days that included multiple admissions to the CHOP’s ER for fevers and other symptoms. But all these visits were necessary to ensure Rafi’s well-being.
Ironically, the fevers he was getting post-surgery were nothing in comparison to the fevers he was getting before his procedure. “I can’t remember the last time Rafi had a fever that lasted just 24 hours,” Dina recalled. His fevers had always been much higher and would last anywhere up to two weeks. But now Rafi has an actual immune system that is capable of fighting off infection.
His immune system is tested regularly and his team of doctors are extremely pleased with his lab results. In fact, his immunology team describes his immune system as “rockin’!” While there is still a journey ahead on the medical front, doctors feel Rafi is doing incredibly well and is expected to essentially be cured of the life-threatening outcomes of XLP.
Rafi turned 6 in April and because he managed to hit all his milestones early for a transplant patient, he was able to receive his re-immunizations earlier than the one-year mark. These immunizations are typically similar to those that a six-week-old infant would receive, relieving him of 99% of restrictions.
Rafi is now cleared to attend school, camp, shul and even simchas. Of course, caution will always need to be exercised, but otherwise Rafi is on course to resume the life of a normal kid.
One of the first places Rafi went after receiving his vaccines was to the grocery store, where he happily skipped down the crowded aisles, so excited to be in a place that everybody else would take for granted. He’s since returned to shul with his father and resumed going to many other places that had previously been off-limits for so long. The journey to return to normalcy has been just as big of a shock for Dina and Dovi. “It’s hard for us to wrap our heads around it—to have him go be a kid.”
The family has shifted their focus to Rafi’s social front and making sure that he is reintegrated slowly back into society after having been in the house since October. He will begin first grade in the fall but will first attend two weeks of Camp Simcha and then off to Camp Sunshine, a local day camp geared for pediatric oncological patients.
The Meleses are quick to point out that although he did not have cancer, the fact that he underwent a bone-marrow transplant, stayed in the CHOP oncology ward for weeks and had a number of treatments that are used to treat cancer, many organizations made an exception and allowed Rafi and the family access to their resources.
While in the hospital, it was discovered that Rafi has musical aptitude while fiddling with the piano there, so now he takes keyboarding lessons. He reads and does math on a level well beyond his years and can’t wait to go to school—just like any regular kid.
The family is planning a seudat hoda’ah for September, around the one-year anniversary of his transplant. The event will take place in East Brunswick, where Rafi spent the first few years of his life. The Meleses are grateful for how supportive their shul was even though they knew the family was moving away, ensuring they would be OK financially and rallying for them even as they were leaving.
The Meleses are eager to express their thanks and recognition for all the people who rallied and supported the family, whether through financial assistance, tehillim, chesed acts and many other ways. “So we hope a lot of the people that were very involved with Rafi’s situation will be there.” Dovi added: “You see a lot in illness; you see the very good in people and unfortunately you see a lot of the not-so-good, the folks you thought were good friends who run for the hills the second they learn of illness. We wanted to express a lot of gratitude and hakarat hatov to those organizations, individuals and shuls that chose to assist however they could.”
By Ronit Mershon