In addition to managing her condition on a daily basis, she has had to travel back and forth to North Carolina from her home in Virginia to recieve adequate medical treatment. When Kyla recieves her heart transplant, it will also be very expensive for her family.
Please help her family cover the expenses of her Medical Treatments, care, and travel expenses back and forth from Virginia to North Carolina.
More about Kyla's story:
On February 25th, 2015, after months of breathing difficulty that was incorrectly identified as pneumonia, Kyla Rose Robbins was diagnosed with dilated cardiomyopathy (DCM). DCM occurs when disease affected muscle fibers are enlarged or stretched 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, it is life threatening. During 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, the results of Kyla's genetic test confirmed that Kyla has a genetic mutation in her LMNA (lamin-a) gene which points towards Emery Dreifuss Muscular Dystrophy (EDMD). It has primarily targeted her heart muscle.
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 told her she needed to "get stronger or get comfortable." On March 10, 2016, we headed to Duke University to get a second opinion. In two weeks they were able to evaluate her and approve her for the transplant list! She now has a peripherally inserted central catheter (PICC) line which constantly delivers a strong heart medication, milrinone, directly into her heart. This will hopefully be her bridge to transplant.
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- Lori Joseph
- Kamala Bauers
Organizer and beneficiary
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