Updates

About Bianca

Bianca was born in 2004 at 3 pounds 3 ounces. She was diagnosed shortly thereafter with Trisomy 9 Mosaic, a rare genetic disorder that delays physical and mental growth. Doctors anticipated her life expectancy to be approximately 2 years at best. She struggled through her first year of life spending most of it in the PICU at All Children’s in St. Pete. She received a feeding tube at 8 months and has been dependent on that ever since.

Despite her gloomy start in life, Bianca has trumped all the odds stacked against her and celebrated her 10th birthday this year. She has over come so many things. Even though she is non-verbal and relies on a wheelchair, she takes adversity and makes it into sunshine and rainbows. Bianca is the happiest,kindest little girl. She has a warm gentle touch that could move the heavens.  She has been in physical therapy, occupational therapy and speech therapy since she was 10 months old. With the help of the therapist and her special needs school, she has learned to ride an adaptive tricycle, and walk short distances in an adaptive walker.

Approximately 3 years ago, Bianca was accepted into the Shriners care in Tampa where they identified her Scoliosis. Due to her lack of muscle tone from the Trisomy 9 Mosaic, her scoliosis has and is rapidly progressing. It is impeding her ability to sit up straight, has offset her hips which creates a challenge when she tries walking for therapy. The scoliosis is so severe it has started to compress her internal organs therefore making it necessary to have surgery to place rods in her back to relieve to stress the curve in her spine is creating.

Bianca’s doctor, Dr. Cronen of the Florida Medical Clinic recommended magnetic growth rods for Bianca. They will allow Bianca to continue to grow without permanently fusing her spine until she is at 90% growth. These special growth rods will relieve the pressure on Bianca’s internal organs, straighten her spine by nearly half it’s current curvature and will realign her hips so she can sit and walk. The magnetic growth rods can be adjusted in office without the need for additional surgeries which contributes to less recovery and risk of death from multiple surgeries and use of anesthesia. Traditional growth rods require invasive surgeries every 6 months to manually adjust the rods as she grows until she is ready for fusion. Bianca is not a good candidate for traditional rods because she is so small, has a compromised immune system and asthma making her a high risk patient for repeat surgeries.

Comments are closed.