One of the biggest fears a parent can have is watching their child fight a serious illness. Robin Pownall can unfortunately attest to that, as her twin sons were diagnosed with a dangerous disorder. However, their older brother Michael Jr. then decided to step up, giving them a gift that saved their lives.
South Philadelphia residents Robin and her fiance Michael DeMasi have four children together named Dominick, Michael Jr., Santino and Giovanni. The latter duo, nicknamed “Sonny” and “Gio,” are twins, born in October 2017. However, their arrival initially came as a shock to their parents.
Indeed, Robin and Michael didn’t intend to get pregnant at that point, but when the former discovered that she was expecting twins, everything changed. “God’s a good pitcher, I’ll tell you that,” she told The Philadelphia Inquirer in February 2018. “He threw us a good [curveball].”
Following their birth, Sonny and Gio spent the next few weeks in the hospital’s neonatal intensive care unit, before finally going home. Within ten days, though, the twins were then transported to the Children’s Hospital of Philadelphia, following a devastating diagnosis. Unfortunately, the boys were suffering from a condition known as chronic granulomatous disease (CGD).
CGD is a rare disorder which causes your body’s immune system to stop working. As a result of that, you become vulnerable to any kind of infection or virus. “It’s like the bubble-boy syndrome,” Robin told The Philadelphia Inquirer. “If we don’t do a transplant, they can get very sick from a small infection. A cut can be fatal.”
Mom Robin is unfortunately better-versed than most on the subject of CGD. Indeed, her oldest son Dominick was also diagnosed with the condition as a baby. He subsequently spent close to a year at the Children’s Hospital of Philadelphia, with doctors monitoring his condition. On the eve of his first birthday, though, the youngster was handed a lifeline.
Dominick was given a stem cell transplant from a donated umbilical cord, which in turn helped his immune system. Since then he’s made a full recovery, living life as an energetic, healthy young boy. However, some eight years after that procedure, mom Robin was about to relive it with the twins.
As for how Robin’s younger children also got the illness, there is a rather cruel explanation. CGD is a hereditary condition that attacks the X-chromosome, meaning boys are more likely to get it. To make matters worse, it’s usually the mother that passes down the problematic gene.
Thankfully, Michael Jr. avoided the disease, but Robin was immediately concerned during her pregnancy with Sonny and Gio. As she carried the gene, the mom feared that her baby boys would be affected just like Dominick. And sadly, her concerns were merited.
Much like their older brother, Sonny and Gio required a transplant to save their lives. However, whereas Dominick received his stem cell transplant from the donated umbilical cord, the twins needed a bone marrow transplant. The key differences didn’t end there, though.
Indeed, the stem cells that helped Dominick make a full recovery came from an unknown donor. But in the case of the twins, a perfect sibling match would be even more effective in fighting off CGD. So with that in mind, Michael Jr. was tested as a potential donor.
The results showed that the youngster was a perfect match for both Sonny and Gio, much to their parents’ delight. However, due to the serious nature of the procedure, both Robin and Michael asked Michael Jr. if he wanted to go through with it.
“We were straight up. ‘It’s going to be a big needle going into your back, bud,’” Robin recalled to The Washington Post in May 2018. “We asked him, ‘Do you want to do this? If you’re scared, you don’t have to.’” At that point, Michael Jr. questioned if the transplant would help get the twins back home.
When mom Robin said yes, her son agreed to the procedure, revealing that he wanted to “save” the twins. Despite getting the go-ahead, though, the mom still had some doubts. “Part of me was like, ‘Well, [Michael Jr.’s] four,’” she said. “‘Maybe he doesn’t know what’s going on.’”
“But he did, and he was all for it,” Robin continued. “We were in no way, shape or form going to push anything. He was all for it and we had a good feeling about it. It’s amazing — he’s so proud. Such a brave little guy,” she said. With Michael Jr. ready to go, the transplant was set for March 8, 2018.
After Michael Jr. was taken in for the procedure, Robin started to worry while sitting in the waiting area. “I thought it was going to be harder on him than it was,” she told The Washington Post. “He’s so small. You don’t want your babies to be in pain.”
Despite Robin’s fears, though, Michael Jr. was fine. The youngster was back on his feet a few hours later, excited by the part he had played. After that, Robin’s sister Casey offered a detailed look into the next stage of the transplant on the website GoFundMe. She had set up the page to raise money for her family back in December 2017.
“Giovanni received the bone marrow cells [at] around 2:30 pm,” Casey wrote on GoFundMe. “And then Sonny received the bone marrow cells around 5:30 pm. Both babies are doing well and sleeping. Now is time for their bodies to heal, with the new bone marrow cells to build up a healthy immune system.”
For the next two months, Sonny and Gio stayed at the hospital. But that all changed in May 2018. “It’s been a while since I’ve updated, but [I] wanted to thank everyone for the support,” Casey said. “The twins’ transplants [were] successful. They finally left the hospital on May 1 and are doing very well.”
Much like Dominick, the twins were given the all-clear after the transplant, but the doctors continued to watch over them. As they left the hospital, though, Michael Jr. had a heartwarming message for his brothers, with mom Robin capturing it on camera. “I saved you guys,” he says. “It’s time to go home.”