Danon Disease: Help for Lindsay Rankins

My daddy & Lindsay have been together for 16 years, married for 12. In 2013, they were blessed with a bright eyed baby boy!! That baby boy ended up saving Lindsay’s life. He didn’t start talking when we thought he should be (2015), so having tests ran, we found out he’s Autistic! Also, through these tests we found out he had a very rare heart disease called Danon Disease (which has no known cure - only a heart transplant). The disease is genetic and after more tests we found Lindsay had it as well (this was in 2016)!! Never have I seen someone go through something like this and remain in such strangely good spirits!! Even on the days she’s too tired to get out bed she maintains a positive outlook over her situation.

She has been on the heart transplant list (in Louisiana, where we call home) for 650 days!! Landon has been a part of a study for Danon disease, doctors hoping to learn more about it and eventually a cure or medicine to help with the effects of this disease. The study is all the way in San Diego California. During the stay for his appointment, Lindsay was unresponsive in the middle of the night and my dad called an ambulance and she was rushed to the hospital there. The doctors expressed that they believe she could possibly get a heart transplant in San Diego quicker than in New Orleans. So, they did the workup and brought her case to the transplant board in San Diego and she was approved for the list there!! Now they are having to make a home in San Diego where the cost of living is so much higher than we are used to in the south. Any donations will be used to help Trey and Lindsay with bills, hotel, rent car etc while waiting for new heart. As long as it takes for her to get the call, they will be living in San Diego. Any money that is left after heart transplant will be donated to UC San Diego Danon disease program to help get a cure for this horrible, rare genetic disorder. Please keep my family in your prayers during this time. Thank you so much.