Meet Jeremy: A Superhero Like No Other
“Our entire experience required a lot of heart and trust and I have been able to confidently get to that place because I have witnessed medical progress and positive impact that care has had on my kids’ lives. I am grateful to all the staff at Valley Children’s who continue to help us – they are the lifeline that my kids depend on and for that, I will forever be grateful.”
– Kong, Jeremy's dad
Jeremy enjoys playing with magnetic tiles which he uses to build a colorful city for his superhero action figures. This artificial city is full of real excitement for friends like Captain America, Hulk, Thor, Batman and Spiderman, Jeremy’s favorite.
Jeremy also lives with Hemoglobin H Constant Spring, a type of alpha thalassemia. He was diagnosed through newborn screening and received his first blood transfusion when he was 6 months old. Today, nine years later, Jeremy’s imagination knows no bounds, as imaginative play is how he passes the time during the three to five hour-long appointments he has every three to four weeks.
Optimizing Care and Support
Although Jeremy has an inherited condition, it was a surprise to both his parents, who later learned through genetic counseling support that they were both carriers.
"Jeremy comes to every appointment with his younger siblings, Tinsely and Ryser, who also have the same diagnosis. All three of them are transfusion dependent, which means they HAVE to be transfused every three to four weeks to maintain an adequate quality of life," explained Dr. Latha Rao, Valley Children’s pediatric hematologist/oncologist. “Each appointment starts with getting labs drawn and having an IV placed either by the RN or the vascular team who use an ultrasound machine. These chronic transfusions have side effects including iron overload which needs regular monitoring – yearly ultrasounds of the abdomen, echocardiograms, MRIs, measurement of iron in the body and audiology and endocrine evaluation. All three of them have different iron levels so are being managed slightly differently.”
Jeremy and younger siblings Tinsely and Ryser are all smiles during their appointment
As regular treatments marked by transfusions and meticulous care became a rhythm in Jeremy’s life, it was a beat that became amplified when his younger siblings were also diagnosed.
“We have been coming to Valley Children’s since Jeremy was so young and beyond the exceptional clinical care we have received, there have also been so many supporting staff members who have helped us manage this along the way,” shared Kong, Jeremy’s dad. “From genetic counselors, we learned about this inherited condition and family planning. From case managers, we learned what thalassemia is and came to understand the challenges of Jeremy’s body functions. Through dietary and nutrition, we discovered Jeremy’s limitations and that he could not have lima beans. And our nurse navigator keeps us connected with the necessary specialists who help us manage it all.”
A Superhero Like No Other
Like Spiderman in Jeremy’s colorful, magnetic city, Jeremy is the leading superhero who has defeated the villain of uncertainty brought along by this genetic condition.
Jeremy smiles as he plays with the city he built for his superhero friends
“Our entire experience required a lot of heart and trust and I have been able to confidently get to that place because I have witnessed medical progress and positive impact that care has had on my kids’ lives,” added Kong. “I am grateful to all the staff at Valley Children’s who continue to help us – they are the lifeline that my kids depend on and for that, I will forever be grateful.
Cancer and Blood Disorders Expertise
As one of the leading pediatric cancer facilities on the West Coast, Valley Children's serves as the only provider of pediatric oncology services between Los Angeles and the Bay Area. Our team provides specialized services for a range of cancer and blood disorder conditions, from the most common to the rarest conditions. Learn more about our Cancer and Blood Disorders Center >>