Heart Warrior Reese
In honor of Heart Awareness Month and Rare Disease day it is our families mission to bring awareness to the heart disease that almost took our daughters life, Histiocytoid Cardiomyopathy. We hope to raise money for research towards this disease by donating it directly to Rady Children's Division of Electrophysiology. Our dream is that no parent has to lose another child to this disease or experience the pain that we felt when we almost lost our daughter. Here is our story:
When Reese was 8 months old she was taken to the Emergency Room in Encinitas after her mom noticed a rapid heartbeat while Reese was asleep in her crib. At the ER in Encinitas her heart was beating abnormally and way too fast at 300 BMP. She was immediately transferred to the Cardiovascular Intensive Care Unit at Rady Children's Hospital. Shortly after Reese arrived she coded requiring CPR and surgery before being put into a medically induced coma requiring an ECMO machine (heart and lung bypass machine; life support) to let her little heart rest. Doctors and nurses worked around the clock to keep her alive, with her heart function becoming so poor they were prepping her to go on the heart transplant list. Miraculously her function improved and eventually she was sent home on multiple medications to keep her heart beating normally.
Histiocytoid Cardiomyopathy is a rare arrhythmogenic disorder, which presents as difficult-to-control arrhythmias. This happens due to an abnormal cell growth which causes the hearts electrical activity to misfire. There are less than 100 patients who have been described in the literature and the majority of those patients were girls who died suddenly and were under the age of 2. Reese is one of a few patients worldwide who is living with this condition. Doctors are learning from her and are hopeful she can outgrow the condition, but she is uncharted territory and we just have to wait and see. They think the disease is multiple-times more prevalent in undiagnosed SIDS cases as well. They don't know what causes it, what triggers it or how to screen for it. We're hopeful that the work they do with Reese helps them get closer to answering some of these unknowns.
Prior to diagnosis, our family had no warning signs that there was something wrong with Reese's heart. When in utero all ultrasounds came back normal as well as all pediatric appointments once she was born. Reese was excelling in all aspects of her life.
Reese is currently 18 months, doing great and thriving! She is an active happy toddler who loves to climb on any and everything and play with her older sister Sydney. She continues to take medications three times a day to keep her heart beating normally and we continue to hope and pray she will outgrow this condition.
With your help we hope we can make a difference - any amount, big or small, will help get that much closer to tackling this disease.
Thank you! Megan, Jay, Sydney & Reese Boyle
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