Patient Stories

When Kynadi was just two weeks old, doctors became concerned. Kynadi appeared to have Sickle Cell Anemia, an inherited condition in which the body lacks sufficient healthy red blood cells to ensure enough oxygen. Rather than being whole and round, sickle cells shrink and curve like tiny moons — like sickles. But how could Kynadi have Sickle Cell Anemia? The labs that were drawn from Kynadi’s mom, Tiffany, said she didn’t carry the trait for Sickle Cell Anemia, and both parents have to be trait carriers in order for a child to have the condition. Had the tests on Kynadi been misinterpreted? Unfortunately, no. Rather, the lab had erred with Tiffany’s report. They finally discovered that Tiffany did, in fact, carry the trait for Sickle Cell Anemia. And Kynadi had the disease. For the first several months of Kynadi’s life, monthly appointments to check her hemoglobin constituted the bulk of the differences between her infant life and those of others. But when Kynadi reached nine months, she had her first Sickle Cell attack. She tried to walk but fell down, screaming in pain, because sickle cells were blocking off her blood vessels. From nine months of age until her bone [...]

In May of 2017, senior in high school Nick Garrett crossed the stage at Searcy High School in Searcy, Arkansas. Robe flowing and cap donned, Nick, surrounded by similarly dressed classmates, received his diploma in the high school auditorium. But this wasn’t Searcy High School’s official graduation ceremony. Instead, it was a special ceremony for Nick, who had been diagnosed with Acute Lymphoblastic Leukemia in January. His treatment caused him to miss the graduation ceremony, so the counselors at Searcy High School planned a special moment to give Nick his diploma. “This small act turned into a larger event as many of my classmates and other students found out and attended the mini-graduation,” Nick said. “A large portion of the school staff also attended and it became a standard graduation...The mini graduation was awesome because it allowed me to see my friends from school, some of whom I hadn't seen for months. It also served as an escape from my current situation.” That situation included multiple rounds of chemotherapy, fighting minimal residual disease, and discovering that Nick's sister, Brittany (pictured) was a perfect bone marrow match for Nick. While staying on the Bone Marrow Transplant Unit at Texas Children’s [...]

Stage four Non-Hodgkin’s lymphoma interrupted Jailyne’s senior year of high school. Suddenly, in addition to a life full of classes, band practices, and preparing for college, Jailyne was forced to endure pokes, prods, and acute illness. Jailyne missed so much about the outside world. But a few things — people, really — brought Jailyne comfort when she couldn’t leave the four walls of the hospital, and later on when she lived in post-transplant temporary housing provided by HGF. “I like the days where I get to see my favorite nurses,” Jailyne said. “I also like coming to clinic...and sometimes there’s events in the hospital, like the BMT Lock-in, where I get to interact with other people like me.” Jailyne’s love for people who have a common experience with her has extended to her career as a college student. Despite being a self-taught artist, she is an Art major at the University of Houston, an undertaking made possible in part by a scholarship from the His Grace Foundation Holly A. Hardy Educational Support and Scholarship Fund. At the beginning of the school year, Jailyne entered her first-ever art class, Principles of Drawing. She felt intimidated and wondered if she had the same abilities [...]

When DannyRan Matthews goes to the beach, you might just mistake him for a fish. His mom can hardly coax him out of the water. From the first early-morning moment when he climbs out of his tent on the shore, ten-year-old DannyRan just wants to explore the ocean. For his mother, Eryn, DannyRan’s love for the wide-open ocean stands in stark contrast to his confined first year of life. Just after his two-month vaccines, DannyRan became seriously ill. After several trips to the pediatrician and rounds of antibiotics failed to lead to improvement, he was admitted to the hospital where he quickly deteriorated and was placed on a ventilator. Doctors couldn’t seem to find the answer. While in the hospital, DannyRan finally began to improve a bit. His hospital doctors planned to discharge him, but his pediatrician was not about to let that happen. She knew something still wasn’t right. DannyRan’s pediatrician contacted a colleague who worked in the Allergy and Immunology Department of the hospital where DannyRan was staying. After further testing, DannyRan’s results seemed to indicate an immune disorder. As his family awaited finalized results from samples sent to Texas Children’s Hospital (TCH), DannyRan was sent home [...]

Just a month before her high school graduation, Hala Shaath was diagnosed with Severe Aplastic Anemia. “Instead of preparing for finals, graduation, and college applications like everyone else,” Hala said, “I was worrying about my treatment and transplant.” Hala wanted to enroll in classes for the upcoming fall semester, but she soon learned that her condition and treatment meant she could easily catch infections and needed to limit her contact with others. Discouraged but resilient, she wanted to enroll in online classes instead, but her doctors explained that she may be too exhausted to keep up with her coursework. “I was very devastated,” Hala said. “I wanted to start college with my friends and feel that excitement they were feeling, but I felt the complete opposite.” During her time on the Bone Marrow Transplant Unit of Texas Children’s Hospital, Hala “had some good days, and some bad days where I felt horrible and really thought to myself that I really would not be able to do what I had planned to do — go to college and live my life.” Her BMTU stay was “extremely tough,” but Hala’s nurses made her feel truly cared for and like she had a [...]

In October 2018, Ericha Williams noticed that her young daughter, Addyson, was sleeping an unusually large amount. She also began to notice unexplained bruises on her daughter's body. After a few days of doctor's appointments and blood work in search of an answer, they knew — Addyson had Severe Aplastic Anemia. Addyson underwent two bone marrow transplants that failed. She suffered multiple line infections and dangerously low platelets. In it all, as her parents and doctors tried to find a way forward, Addyson radiated joy. She delighted in the snacks and lemonade provided by HGF during Summer Camp on the BMTU, Ericha recalled with a smile. For Ericha, the week meant something so much more — camp brought her daughter exactly the types of experiences she'd longed for her to have. “I cried every single day [of camp],” Ericha recalled. “Because this was the kind of stuff she should be getting to do, but she can’t.” Tears came to Ericha’s eyes yet again when she told Carolyne Digel, HGF’s Program and Volunteer Coordinator, that Addyson would have to have a third transplant. “Carolyne cried with me in the hospital one day when I told her Addyson had to have [...]

When Laila was just nine months old, doctors diagnosed her with Acute Myeloid Leukemia (AML). After chemotherapy, it became clear that Laila required a bone marrow transplant during the holiday season of 2018. “Laila had to be away from her sister and brother,” said Bianca, Laila’s Mom. “And she had to stay in the hospital for 41 days.” The bone marrow transplant took a toll on Laila's body. She experienced weight gain and weight loss and contracted viruses that prolonged her time spent away from her siblings. She also had to transition from exclusively breastfeeding to eating solid foods, which Bianca said was “the hardest.” So many transitions, so many losses of beloved, home-like comforts, and such a little girl. Bianca grieved Laila spending Christmas in the hospital away from her siblings. But, she said, “being able to meet HGF once again and receiving the many gifts for our family during Christmas was very thoughtful. It helped during the toughest times knowing that we [weren’t] forgotten.” Bianca said that HGF took stress off her shoulders both literally and metaphorically. She sometimes slept in the hospital bed with Laila, and at other times on the pull-out bed next to her. [...]