On February 25th, 2015, after months of breathing difficulty that was incorrectly diagnosed as pneumonia, Kyla Rose was found to have dilated cardiomyopathy (DCM). DCM occurs when disease affected muscle fibers are enlarged or stretched (dilated) in one or more chambers of the heart. As the heart enlarges, it decreases its efficiency in pumping blood through the body. When the disease progresses to congestive heart failure, fluid can build up in the lungs, as is the case for Kyla.
On her very first visit to a cardiologist, Kyla was told that the only "treatment" for her condition would be a heart transplant. This has been confirmed by many tests, evaluations and procedures since then, including multiple echocardiograms, a cardiac MRI and a right-heart catheterization.
On March 16th, 2015, she had surgery to place a subcutaneous implantable cardioverter defibrillator (S-ICD) at UVA Medical Center in Charlottesville, VA. It has activated twice when Kyla experienced what would have been fatal arrhythmias.
In June, 2015, we found out that Kyla has a genetic mutation in her LMNA (lamin-a) gene which points towards Emery Dreifuss Muscular Dystrophy (EDMD).
Right now, though she has experienced some contractures and muscle weakness due to the dystrophy, her heart failure is the most pressing symptom she is experiencing and the one that is life threatening.
At the end of January, 2016, Kyla spent a week in the hospital at the UVA Medical Center. She had accumulated a lot of excess fluid and lost about 10-15 pounds while on intense IV diuretics. While we were there, she was told that she was too weak to survive a transplant and would not be assessed further at this time by the transplant team at UVA. They want her to "get stronger."
On March 10, 2016, we're headed to Duke University to get a second opinion. Without a heart that can tolerate vigorous physical therapy, it will be difficult for Kyla to "strengthen." It is our hope that a different medical team will be able to examine more options and that by embarking upon the process with more accurate knowledge of the genetics involved, they can proceed with an assessment that is more applicable to her unique condition.
The financial support from our friends and family has made the logistics of traveling, as well as supplements, equipment, therapies and supplies that medicaid does not cover, possible. It has sustained us through very difficult circumstances and made it possible to get through this on a reduced income. Kyla requires, and will continue to require, a lot of primary caregiving. Her continued care will continue to require a lot of travel. Here is a link to Kyla's GoFundMe account:
https://www.gofundme.com/kylarobbinsThank you for reading Kyla's story and being willing to walk with us on this bridge of support and healing.
