Meet our 2019 Kids Gran Fondo Heroes!
Callie recently celebrated her 9th birthday, and has already experienced over 150 hospital admits in her life. Starting at just 4 months old, she has been diagnosed with multiple medical conditions including hereditary pancreatitis, and an as yet undiagnosed genetic disease that causes widespread neurological issues and organ involvement and severe pain. She is currently involved with a top hospital in genetic research and is hopeful they will figure it out soon!
Callie’s body doesn’t process and absorb nutrients well, so she had been Total Parenteral Nutrition (TPN) dependent for 7 years until 5 months ago when she had to be treated for fungal sepsis after a wire that was left in her during a line placement migrated through her heart- this lead to her being weaned onto J-Tube feeding. She is excited to be central line free and hopeful that will continue!
Callie has experienced many hardships, but she is one strong girl! You will usually find Callie smiling, even when she is hurting! Though she has been unable to attend school due to her frequent admits and her low immune system, she loves going to dance and other activities with small class sizes. She is very social and loves everything girly and pink! Her favorite thing to do at home is to play with her sister Mikayla.
Two year old Vaughn was diagnosed in utero with a congenital heart condition. He spent the first two weeks of his life in the NICU at UCSF Benioff Hospital. At three months old, his heart condition worsened and he had to be hospitalized again at UCSF and placed on cardiac medications to manage his illness. At four months of age, with a life-threatening condition, his care was transferred to Stanford Children’s Hospital where he was put on a waiting list for a heart transplant. His family was told that it could take up to a year or more for him to receive a donor heart, and that he had to remain in the hospital during that time on IV medication to sustain his well-being, but on his nine month birthday, they were blessed with a donor heart and Vaughn was transplanted. Vaughn takes a plethora of medications to prevent his body from rejecting his new heart. This medication also suppresses his ability to fight common illnesses and viruses- as a result he has spent almost half of his life in the hospital. Most recently he was hospitalized for three months on isolation with norovirus. His mother, Amanda, was eight months pregnant during that hospitalization and subsequently gave birth while caring for him in the hospital. During this time, Amanda traveled back and forth the 180 miles round trip, sometimes twice a week, with a newborn and a toddler.
Vaughn currently receives physical, occupational, cognitive and speech therapies on a weekly basis. Because he was in a bed hooked up to machines and medications for five months while waiting for a new heart, his gross motor skills and speech were delayed, however, he is now almost caught up to his little twin brother, Vicente, who is younger by one minute. Additionally, Vaughn requires catheterizations every 4 weeks at Lucille Packard to detect heart rejection- fortunately, he has shown no signs of rejection!
Along with his twin brother, Vaughn’s family includes his 6-month old baby brother, Valen, his mother, who recently returned to a full-time position as a nurse, and his father, who left his job as a chef in San Francisco to care for their boys. Unfortunately, because of his compromised immune system, Vaughn has to avoid public places like preschool, the library, swimming, movies, Chuck E Cheese, and even church services, but he is the sweetest little boy- and a normal two year old! He loves cars, trains, and airplanes, his dog Pippa, and two cats, Lucy and Monkey. Vaughn is also a fantastic, joyful dancer!