Support for Kyla's Healing Heart

Kyla Rose Robbins is nineteen years old. She loves music, animals, photography, gemstones, drag, philosophy, video games, punk, and her beloved community of Floyd County in the Blue Ridge Mountains of Virginia.

She’s also spent the last two years fighting for her life.

What was initially thought to be pneumonia turned out to be advanced heart failure caused by Dilated Cardiomyopathy. Her Dilated Cardiomyopathy turned out to be caused by a genetic mutation that led to a rare condition called Emery Dreifuss Muscular Dystrophy (EDMD). After over a year of multiple hospitalizations while seeking appropriate diagnosis, treatment and care, Kyla was finally evaluated for a heart transplant at Duke University Hospital and placed on the transplant list in March of 2016. She struggled with brutal side effects from intense anti-arrhythmic medications and had to have a portable IV pump to keep her stable for the brief periods she was able to be home.

In June of 2016 she landed in the Pediatric Cardiac Intensive Care Unit (PCICU) and was not able to be released until the end of October. On September 2, 2016 she received a left ventricular assist device (LVAD), a battery-operated, mechanical pump that is surgically implanted in patients who have reached end-stage heart failure. Two months later, only 36 hours after being discharged from the hospital, her donor heart was found and she underwent a second open heart surgery. Though she will continue to be medically fragile, she is recovering. Our gratitude to her donor and their family knows no bounds. This new heart is giving Kyla a second chance at life.

We are raising money to support Kyla’s recovery.

During the last two years we have been in the hospital more than we have been out. Many pieces of our life have fallen apart. We are starting over. Over six months of not only being away from home but also living in a critical care unit has left us with limited and compromised resources.

As Kyla gets stronger and adjusts to her new heart, we are hopeful that she will be able to strengthen. We seek to identify and deal with the symptoms of her EDMD now that the life-threatening issue of her heart failure has been addressed.

We have needed a lot of help throughout this journey. Truly, we would not have gotten through this process intact without your help. We are so grateful for the support that has sustained us.

We still need your help. This fund will be utilized for necessities such as:

·         Housing

·         Utilities

·         Car repair

·         Travel Expenses

·         Food

·         Supplements

·         Therapies not otherwise covered

·         Veterinary care for our pets

·         Rebuilding an interrupted life

It is our most sincere intention to settle back in Floyd County, though we will be travelling back and forth to Durham often—especially throughout the first year— for treatment from Kyla’s transplant team.

Throughout this long quest, Kyla’s fiancé, Dylan, has remained by her side taking care of her and holding her up in constant support. I have also been present— as a mother, a medical advocate and caregiver, throughout the process. Though this has been the obvious work we’ve had to do, and neither of us could have abandoned her, it has not facilitated earning an income.

We are so grateful for your ongoing support; so thankful to have understanding, compassionate people in our lives; deeply appreciative of all that you have offered us to sustain our journey and eager to know what it feels like to be stable again.