GET TO KNOW OUR HONORARY CAPTAINS

MEET COLE: NOVEMBER 22, 2024

Cole was born 9 weeks premature due to intrauterine growth restriction (IUGR) and spent 41 days in the NICU to receive critical care that helped him grow and thrive. Cole arrived, weighing just 2 lbs. 6 oz. He was immediately taken to the NICU, where he spent the next 41 days learning to breathe, eat, gain weight, and regulate his body temperature. During this time, Cole faced challenges such as jaundice, low platelet counts, and failure to thrive. Not only was Cole given specialized care to keep him alive, but our entire family received support from the hospital and child life services. The hospital staff did more than just care for Cole; they also cared for us. 

Since leaving the NICU, Cole has undergone two surgeries and received physical and occupational therapy for the first 2.5 years of his life, speech therapy for three years, and nutritionist support. It's been a long journey filled with therapies, appointments, and surgeries, but the children's hospital has made it as smooth and comforting as possible. They nurtured him through every obstacle and showed us incredible compassion, ultimately helping Cole grow into the spunky, inquisitive, funny, and loving boy he is—now at seven years old!

MEET OLIVIA: DECEMBER 27, 2024

A summer filled with excursions, remarkable athletic experiences, and enjoyable days tubing and boating on Lake Ontario abruptly ended on July 9, 2024. While riding as a passenger on a jet ski, Olivia fell into the water's jet stream, resulting in severe injuries. Upon her arrival at Strong Memorial Hospital, she was promptly taken to the trauma unit, where numerous scans and tests confirmed the necessity for life-saving surgery. The staff exhibited exceptional empathy, patience, and support throughout her ordeal. Olivia is grateful for the unwavering assistance from the trauma unit, pediatric department, and nurses at the Golisano Children's Hospital, which she believes was crucial during this life-altering event. After three and a half months, Olivia made a complete recovery.

MEET BENTLEY: JANUARY 10, 2025

Bentley Vega was diagnosed with acute myeloid leukemia on August 16, 2019. He went into remission after 6 rounds of inpatient chemotherapy but relapsed shortly after in September of 2020. Bentley underwent another round of chemotherapy and a bone marrow transplant on December 15, 2020. Even though he is in remission he is still fighting graft vs host disease due to transplant. He is a true fighter, and he loves hockey! We would like to thank his oncologist Dr. Andolina , the nurses and 7 North and the staff at CURE! Without them, I do not know where we would be today!

MEET TREVOR: FEBRUARY 7, 2025

Trevor was born via emergency C-Section at 37 weeks weighing 5 lbs. 1oz. Doctors said he most likely stopped growing at 33 weeks. Early on we knew Trevor was not developing typically.  He had hypotonia, right sided weakness and delayed development and started physical and occupational therapy at 8 months old. Vision therapy and speech therapy followed shortly after. At one year old Trevor had an MRI that showed he had 2 CVAs, (strokes) one on each side of his brain, in the parietal lobes. He was then given the diagnosis of Cerebral Palsy. He has triplegic spastic CP. Trevor has routine appointments all over Golisano Children’s Hospital and URMC. 

In September of 2021, Trevor had a right femoral derotational osteotomy with internal hardware placement and an adductor tenotomy. He was in the Golisano Children’s Hospital for 5 days. In December of 2023, Trevor had bilateral hamstring lengthening and hardware removal from his hip surgery. This was to help him straighten his legs to make it easier and less painful for him to stand and walk. There will be more orthopedic surgeries in the future as he grows. CP causes muscles to contract causing tightness, which then affects bone growth. Trevor is a happy, funny, determined boy. He is the toughest person I know. He is just sunshine. 

We are so lucky to have Golisano Children’s Hospital here in Rochester. Most people might not really think about such a thing until they need it. Most kids will get a broken bone or stitches or have a few ER visits throughout their childhood, but for those with serious or chronic conditions, it really is much more than just the children’s unit or ER at the local hospital. It’s the comfort of knowing that they know just what your child, and you, will need. 

MEET ZOEY: MARCH 21, 2025

We adopted Zoey when she was 10 days old, and about a week after that, we got a call that her newborn screening test for Sickle Cell Disease came back positive. We were terrified, but one of the first things Dr. Noronha said to us, "this is probably all new to you, and it's scary, but I'm going to be with you every step of the way,” and she has kept her word.

 Zoey was hospitalized almost ten times in her first two years of life, and at every ED visit and admittance, the nurses, doctors, techs, and behavior specialists treated us with such kindness and understanding. As Zoey has gotten older, and more clinic visits, hospitalizations, blood transfusions, pain crises, and other challenges have come up, her support team has helped her understand and deal with not only the physical parts of the disease, but also the mental and emotional impacts, and has provided the tools and support she’s needed.

Zoey has thrived under the care of the Golisano Children's Hospital team.  She has always been active, and Dr. Noronha has been so helpful in encouraging her to do this, while always having a care plan in place.  Because of this, Zoey started playing soccer and doing gymnastics at age 4, and when she was 8 years old, she started ninja warrior classes, and she is now known as the "Tatar Tot Ninja" and trains locally at ROC City Ninja and competes throughout our region.  Her goal is to someday compete on the TV show American Ninja Warrior and hopefully inspire other kids with Sickle Cell Disease to follow their dreams. Zoey is a brave, strong, and resilient sickle cell warrior, and much of that is because of the incredible support that Golisano team has provided.