Meet Izzy: Our 2021 Champion Child
It was 2007, and Daisy and Sam Mirzaei were anxiously awaiting the arrival of their first child. But what should have been a joyous time was interrupted when they learned their daughter would be born with a life-threatening blood disorder called beta thalassemia major.
“She wasn’t even here yet when she was diagnosed,” Daisy says reflecting back on those dark days. “Our hearts just dropped into our stomachs when we realized we could lose our daughter. I still tear up thinking about it.”
Also known as Cooley’s Anemia, the severe condition is marked by red blood cells’ inability to form properly, therefore being unable to carry sufficient oxygen to support normal body function.
As health care professionals themselves, Daisy and Sam both were acutely aware of the journey Izzy was to embark on. They also knew the consequences and risks. Regular blood transfusions and extensive, ongoing medical care would be required almost immediately following Izzy’s birth to ensure her survival.
Fortunately, Hasbro Children’s Hospital was with them every step of the way.
At just one-month, Izzy made her first visit to our hematology/oncology center, The Tomorrow Fund Clinic. And at 11 months old, she had her first blood transfusion. For close to the next decade, Izzy would repeat this transfusion every three or four weeks, while also receiving other types of care.
By 2018, Izzy became a good candidate for a bone marrow/stem cell transplant and, that September with her sister Lillian as the donor, she underwent the procedure at another hospital.
The surgery was successful and, today, Izzy’s care has been scaled back to an annual follow-up, allowing her to spend her time just being a happy-go-lucky kid. She enjoys reading, ballet, watching Marvel movies, and playing with her sisters.
Although Izzy’s road to good health hasn’t been an easy one, she’s risen to every challenge with a positive attitude and fighter’s spirit. Demonstrating such attributes in the face of adversity makes Izzy special – and is one reason she is Hasbro Children’s “Champion Child” for 2021. As such, she’ll spend the next year as an ambassador for our hospital and all the young patients we care for.
“I’ve been going to Hasbro Children’s since before I could remember,” Izzy says with a huge smile. “Everyone is so nice and there is a lot you get to do, like arts and crafts and playing with therapy dogs. They do everything they can to make you feel like you’re a kid.”
Mom also shares strong feelings. “My daughter has such a bright future ahead of her now because of the people at Hasbro Children’s Hospital,” says Daisy. “They became our second family – we were definitely in this together, and that’s something I’ll never forget.”
Meet Joey: He beat COVID, but Joey’s battle was just beginning
Seven-year-old Joey Vito is one of the most active, energetic boys you’ll ever meet – so much so that not even a late December bout with COVID-19 could slow him down.
“My entire family tested positive the week of Christmas,” recalls Joey’s mom, Stef. “In terms of the virus, we were fortunate. All of my children were asymptomatic.”
Five weeks later, however, everything changed.
It was the middle of the night when Joey woke his parents, complaining he was nauseous and hot. His father, Jon, a Cranston Firefighter, took his temperature, which registered 103.2. At that point, Stef already had car keys in hand, ready to take Joey to Hasbro Children’s. In the emergency room, Joey tested negative for strep throat and, without expressing any symptoms beyond his fever, doctors discharged him home, instructing Stef to closely monitor his temperature for 48-hours. If anything changed, especially the onset of a rash, they told her to bring him right back.
“There was a bit of a sense of relief after he was seen,” says Stef, “but we knew the next two days were going to be important, to put it mildly.”
The next day, while getting ready for a bath, Joey took off his shirt and his stomach was covered in a deep red rash. It was also all over his neck, arms and legs.
Stef took him right back to Hasbro Children’s, where he was admitted and began to undergo blood tests with doctors suspecting he had multisystem inflammatory syndrome, known as MIS-C in children.
The rare condition, having shown to appear in children weeks after an exposure to COVID-19, can be deadly because it involves inflammation in multiple organ systems. There is no cure.
“All I can process is how dangerous it is, and how it can shut down organs like his kidneys, lungs, and heart,” says Stef. “I was scared to death. We knew that children in the U.S. had died from this.”
Although Rhode Island has seen just 16 cases of MIS-C since The Centers for Disease Control began tracking reports of it back in May 2020, doctors at Hasbro Children’s knew exactly what to do to care for Joey.
Joey spent four days at the hospital, requiring an aggressive treatment cycle of steroids, constant vitals monitoring, and a series of tests, including for his heart. He went home just before Valentine’s Day, needing to continue a regimen of steroids and low-dose aspirin.
Two weeks after returning home, Joey was able to stop his medication and received good news at his first follow-up with a cardiologist: no sign of fluid in his heart. Joey’s prognosis is good, but with the long-term effects of COVID-19 and MIS-C in children unknown, he will continue with regular cardiologist checkups for the coming months.
“We’re just so lucky with the way all of this worked out for Joey, and that we have this hospital less than 20 minutes from our house,” says Stef. “This was caught so fast, and that’s what I want other parents to know. If a fever isn’t breaking and it’s high, take your child to Hasbro. They’re the experts.”
Meet Jasper: A Little Superhero with a Great Big Heart
In many ways, Jasper Casey is the definition of a typical toddler boy. “He’s very curious and loves to get into things he shouldn’t,” jokes his mom, Lenka, “and he enjoys being outdoors and exploring whenever possible. He’s quite the dancer and artist, too!”
Unfortunately, the health journey Jasper has been on since birth has been anything but typical.
Born with chronic airway collapse and congenital myopathy, Jasper’s road has been an uphill battle from the very start. He spent the first 119 days of his life in the neonatal intensive care unit—or NICU—of the hospital where he was delivered. After that, his care was transitioned to Hasbro Children’s Hospital, where the herculean effort of giving Jasper what he needs to survive continued.
Within his first three months home from the NICU, Jasper tallied 34 specialist visits, five hospital stays, and nine other miscellaneous appointments at Hasbro Children’s, Lenka recounts. The list of procedures and treatments Jasper underwent at the hospital was considerable, too. For example, he had seven bronchoscopies done there.
“It’s all been overwhelming, but the doctors and support staff at Hasbro Children’s have helped us in every way possible—and not just medically,” Lenka says. “They help us find ways to make life more ‘normal’ for our family, too.”
At their Wrentham, Massachusetts home, that meant helping Lenka and her husband, Craig, essentially create a PICU for their son. “There are 12 pieces of medical equipment in Jasper’s room,” Lenka says, “and oxygen tanks in the living room, nurses coming in and out…we have all the tools we need to take care of Jasper at home thanks to Hasbro Children’s.”
Jasper’s rare and complicated condition necessitates that he have a tracheotomy tube in his throat and a gastronomy tube in his tummy; the former to allow oxygen to flow to and from his lungs, and the latter to deliver the nutrition he needs to his stomach. Jasper also came home from the hospital requiring 24/7 ventilator support to regulate his breathing. He was slowly weaned to overnight-only by 18 months, and fully off the vent just before turning two.
Communication is difficult for Jasper, too, because of his diminished airway. “He’s getting more vocal strength, but he still doesn’t really have a voice,” Lenka points out. “So, we don’t hear him talk, laugh, or scream.” Rather, Jasper uses sign language and an iPad-like device called an AAC or augmentative and alternative communication to tell his mom and dad what he wants to eat, watch on TV, or what toy he feels like playing with.
With all that’s going on, Lenka and her husband, Craig, have become adept at doing whatever it takes to keep their little guy healthy and happy. “We’ve learned how to care for his trach with our eyes closed, sterilize everything, use an artificial manual breathing unit, check his lungs for respiratory distress…we’re definitely Jasper’s medical mamma and papa, too.”
But soon, they hope to not need to put those skills into practice ever again.
In March, Jasper’s ENT doctor and pulmonologist at Hasbro Children’s confirmed he had progressed sufficiently and was healthy enough to be a candidate for a complex reconstruction surgery that will make his airway larger, stronger, and capable of functioning as intended.
The six-hour surgery, which is scheduled for May, consists of cutting open Jasper’s trachea and placing a graft—which will be a piece of his rib cartilage—in the area that is narrowed and sewing back up the rebuilt area to heal naturally. Post-surgery will include Jasper being sedated for five days to a state where he cannot adversely damage his new “hardware.” Likely, he will be two weeks in Hasbro Children’s PICU before being discharged home, and his follow-up care will include monthly scopes to ensure all is well.
After that?
“Hopefully, he will be able to go swimming this summer,” says Lenka, who adds: “Life-changing is not a strong enough word to describe what it will feel like for us.”