Brian G, age 8
Photograph by Eva Higgins (2022)
Brian, is called Little Brian by his family since his father is known as Big Brian, but his heart and determination are huge.
Brian spent the first days of his life fighting in the NICU and has been fighting ever since with Rubenstein Taybi Syndrome, a rare genetic disorder that affects many organ systems. His resilience has paid off—he finished chemotherapy last year after being diagnosed with Leukemia at age four. Today, Brian is a happy, creative, and talented eight-year-old who loves reading, toys, and all things music: including playing on his keyboard piano.
Brian’s determination is perfectly complemented by his laid-back attitude. He is patient with his baby sister and calm during all of his medical procedures. His positive disposition has influenced his family as well.
“The best thing is snuggling with him,” his mother, Jessica, says. “He loves big hugs and loud kisses. He could snuggle-play all day!” Above anything else, Jessica wants the world to know that her son Brian is an amazing and resilient person.
“He has shown us that it’s OK to not know the future, or even the next step in your journey,” Jessica says. “No matter what bad things happen to him, he bounces back and finds a way to get through it with a good attitude. He has taught us how to be content in the here and now.”
Brian, es llamado por su familia el Pequeño Brian ya que su padre es conocido como el Gran Brian, pero su corazón y determinación son enormes.
Brian pasó los primeros días de su vida luchando en la UCIN y desde entonces lucha contra el síndrome de Rubenstein Taybi, un raro trastorno genético que afecta a muchos sistemas orgánicos. Su resistencia ha dado sus frutos: el año pasado terminó la quimioterapia después de que le diagnosticaran leucemia a los cuatro años. Hoy en día, Brian es un niño de ocho años feliz, creativo y con talento, al que le encanta leer, los juguetes y todo lo relacionado con la música: incluso tocar en su teclado de piano.
La determinación de Brian se complementa perfectamente con su actitud relajada. Es paciente con su hermanita y está tranquilo durante todos sus procedimientos médicos. Su disposición positiva ha influido también en su familia.
“Lo mejor es acurrucarse con él”, dice su madre, Jessica. “Le encantan los abrazos grandes y los besos fuertes. Podría acurrucarse y jugar todo el día”. Por encima de todo, Jessica quiere que el mundo sepa que su hijo Brian es una persona increíble y resistente.
“Nos ha mostrado que está bien no conocer el futuro, o incluso el siguiente paso en tu viaje”, dice Jessica. “No importa lo malo que le ocurra, se recupera y encuentra la manera de superarlo con una buena actitud. Nos ha enseñado a estar contentos en el aquí y ahora”.
Family Connection of South Carolina provides services and resources to families who have a child with a disability or specialized healthcare need. Since 1990 we have served more than 100,000 families and today our services are needed more than ever. We focus on parent-to-parent support, guidance with navigating the complex healthcare system, and assistance with school meetings and special education plans.