Shawn's fight with Danon Disease
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Shawn is 14 years old and was born with a severe congenital heart disease known as Danon's Disease, 1 in a million people have it. We were told that our son would never outlive us.
Danon disease is a rare genetic disorder characterized by an X-linked dominant inheritance pattern, as a result of which males are more severely affected than females. Among boys, the key features are diseased heart muscle (cardiomyopathy), weakness of the body muscles (skeletal myopathy) and intellectual disability ranging from mild learning problems to overt intellectual disability. In many males, the disease progresses until a heart transplant is required or death occurs in the second to third decade of life.
In October of 2011, at the age of 5, Shawn was diagnosed with Hypertrophic Cardiomyopathy after being airlifted to Riley's Hospital for Children. In January of 2016, Shawn had an ICD implanted in his chest to help avoid harmful arrhythmias that could kill him. In February of 2019, we were referred to the Heart Transplant team where we have been in the process of taking the necessary steps to get him on the heart transplant list.
On the 17th of January, we found out that he had approximately 30% of his heart functioning and we were given a year to year and a half left with him. On January 27, 2020, Shawn was taken to the hospital because he was having difficulty breathing and they increased his meds to help get the excess fluid off his heart and lungs. On January 29, 2020, Shawn's heart was having abnormal heartbeats and he was having difficulty breathing again and he was taken into the hospital for treatment. After being shocked 8 times by his ICD on the 29th it left his heart only functioning at 24%. He was transferred to Indianapolis to be monitored by his doctors. Upon arriving at the Riley's Hospital for Children, the doctors attempted to shock his heart back into rhythm and were unsuccessful. He is now in the hospital long term.
February 03, 2020 Shawn had a heart catheterization to test how well the heart is beating, how much blood is being pumped and the pressures of the heart. Unfortunately his heart is so big it partially collapsed one of his lungs during the procedure and they were not able to take him off the ventilator as of now. There will be other major procedures being done soon.
His father and I are seeking assistance because we live approximately 2 1/2 hours away and are having to travel back and forth as well as vehicle maintenance because of the high mileage. We also have to buy food out because there is no place for us to prepare meals. The hospital is only allowing a limited amount of people up to see Shawn since this flu season has been a bad one. It is also limiting the number of people who can switch out being here with him.
Danon disease is a rare genetic disorder characterized by an X-linked dominant inheritance pattern, as a result of which males are more severely affected than females. Among boys, the key features are diseased heart muscle (cardiomyopathy), weakness of the body muscles (skeletal myopathy) and intellectual disability ranging from mild learning problems to overt intellectual disability. In many males, the disease progresses until a heart transplant is required or death occurs in the second to third decade of life.
In October of 2011, at the age of 5, Shawn was diagnosed with Hypertrophic Cardiomyopathy after being airlifted to Riley's Hospital for Children. In January of 2016, Shawn had an ICD implanted in his chest to help avoid harmful arrhythmias that could kill him. In February of 2019, we were referred to the Heart Transplant team where we have been in the process of taking the necessary steps to get him on the heart transplant list.
On the 17th of January, we found out that he had approximately 30% of his heart functioning and we were given a year to year and a half left with him. On January 27, 2020, Shawn was taken to the hospital because he was having difficulty breathing and they increased his meds to help get the excess fluid off his heart and lungs. On January 29, 2020, Shawn's heart was having abnormal heartbeats and he was having difficulty breathing again and he was taken into the hospital for treatment. After being shocked 8 times by his ICD on the 29th it left his heart only functioning at 24%. He was transferred to Indianapolis to be monitored by his doctors. Upon arriving at the Riley's Hospital for Children, the doctors attempted to shock his heart back into rhythm and were unsuccessful. He is now in the hospital long term.
February 03, 2020 Shawn had a heart catheterization to test how well the heart is beating, how much blood is being pumped and the pressures of the heart. Unfortunately his heart is so big it partially collapsed one of his lungs during the procedure and they were not able to take him off the ventilator as of now. There will be other major procedures being done soon.
His father and I are seeking assistance because we live approximately 2 1/2 hours away and are having to travel back and forth as well as vehicle maintenance because of the high mileage. We also have to buy food out because there is no place for us to prepare meals. The hospital is only allowing a limited amount of people up to see Shawn since this flu season has been a bad one. It is also limiting the number of people who can switch out being here with him.
Organizer
Jody Gillette
Organizer
Gary, IN