At the age of 20, Ashley fell in love and married Johnny, a United States Marine. With a desire to start a family right away, the young couple met with a geneticist. Still with an inaccurate diagnosis of LGMD, the couple was encouraged to start a family and told their risk of complications was low. Ashley became pregnant right away, and ultimately miscarried. The couple conceived again – this time with twins. Ashley had a routine pregnancy up until 27 weeks, when she went into premature labor. Her boys, Alexander and Jayden, were born on May 11, 2012.
After the delivery, the boys were immediately taken to the neonatal intensive care unit and required oxygen. Doctors told Ashley and Johnny that there was no need to worry, both boys would get stronger with time. However, the boys did not improve and eight months into their stay in the hospital, they each received a tracheostomy tube to assist with breathing.
With Alexander and Jayden continuing to decline, a physician recommended additional genetic testing for Ashley. In Ashley’s words, “the worst happened” for her and her boys. Ashley finally received her diagnosis of XLMTM. Having never heard of this disease before, Johnny did an immediate search online for information, and shared the prognosis with Ashley. While the information available for this rare disease was limited, she and Johnny now had answers to Ashley’s poor health and understood more clearly what Alexander and Jayden were facing. In addition to the respiratory and other developmental challenges, both boys were more at risk and susceptible to infection and overall survival rates were terribly low. When the boys turned 14 months old, they were ultimately too weak to overcome a cold that turned into the flu and pneumonia. Alexander and Jayden passed away together on July 11, 2013.
Life continues to be very challenging for Ashley. At age 32, she remains unable to work and requires breathing assistance at night. Her family is afraid to leave her alone, as she has fallen before and has been unable to get up unassisted. Ashely lives with fear – fear of a common cold ending up in another stay in the ICU, fear of continuing to decline, and fear of what’s to come. Ashley feels like she missed out on her education, on being a productive member of society and on being a supportive wife all because of her physical limitations.