Giannely Rosa fights for a cure for Merosin Deficient and other Congenital Muscular Dystrophy. Along with Arthogryposis Multiplex, we believe there is a cure! Science has proven that gene therapy can tap into the body's amazing ability to repair itself.
Giannely Rosa was born in Orlando, Florida USA on October 18, 2003. Immediately at birth she was born different. Doctors said she was a floppy baby. Upon further examination via biopsy, the suspected diagnosis became manifest, Giannely had congenital muscular dystrophy. Along with this disease, Giannely was also born with severely deformed feet, hands and wrists, diagnosed as a disorder called Arthrogryposis Multiplex (Distal). The diagnosis was hard to cope with, as geneticists advised us that Giannely would one day stop breathing on her own and her heart will eventually give out. Further research demonstrated that this is not really the case, although Giannely would never walk. Surprisingly, Giannely walked in her early years with some assistance, but as her body grew, it was evident that the CMD would claim her ability to walk altogether.
We have researched Giannely's disease, which is classified as CMD1A, or Merosin Negative Congenital Muscular Dystrophy with LAMA2 absence. Since shortly after her birth, numerous doctors and scientists from around the world have had a cure. Human trials are difficult to establish, but the disease has been almost completely rectified in lab mice.
Recently, we came across a lab in California that engages in gene therapy using stem cells. Among its patients is a young boy that has been diagnosed with Duchenne Musculary Dystrophy, the subtype with the highest mortality rate in young boys. The results of the therapy are shocking at the very least. The swelling in the boys calf muscles, a signature of DMD, had subsided substantially, and the boy is no longer wheelchair bound. He walks and runs, which is absolutely amazing. Other cases demonstrate similar results, thus proving that stem cell therapy introduces the proper mechanisms into the body that repair damage caused by abnormal or defective chromosomes in children. The science simply makes sense. God made the human body to function as a progressive organism, and scientist have seen time and time again how the human body is DESIGNED to regenerate and repair itself. By introducing a healthy chromosome or alternate replacement, the body will basically reprogram itself to produce the missing components it originally should have produced in the first place. In a sense, a child can start fixing him or herself by commencing the growth patterns that were absent at birth. The cure is never 100% due to residual neurological damage or skeletal deformity, but in the case of Giannely, MUSCLE can start to grow strong like in a normal child. This will mean a whole new life for this beautiful little girl!!!
The approximate cost of this stem cell therapy is $25,000, which insurance companies will not help with. We are aiming to raise this money in order to give Giannely a chance to live her life to the fullest.
Giannely is an artist with an affinity for painting. She loves to draw. She is also a dancer, although she can only stand on her knees. Giannely also has developed a love for archery, although she can't hold a bow, nevertheless pull back on the string to shoot an arrow without complete assistance... We are confident Giannely can be helped!!!