Joseph, aged 13, was born with Hypo-plastic Left Heart Syndrome which affects normal blood flow through the heart. Since he was born he has undergone multiple procedures for this syndrome but unfortunately this disease is a lifelong disease.
The overall survival probability of children with single ventricle anatomy and staged surgical intervention has increased significantly over the past several decades but despite this the lifelong complications impact health and potential for liver fibrosis, fontal failure, and the need for a heart transplant. Due to Joseph's syndrome, when he got a bacterial virus he developed a brain abscess and had a stroke last year at the age of 12.
He's underwent a craniotomy for left frontal abscess evacuation in 2018 but now suffers from low normal RV systolic function, trivial AV valve regurgitation, liver fibrosis, anxiety, PTSD and severe depression.
Joseph's mother said that despite his heart disease, Joseph was always a very happy kid. However, after he had his stroke his personality completely changed. He has severe panic attacks, nightmares, suicidal thoughts, and is very reserved. Joseph loves art and has recently found comfort in natural remedies including Essential Oils. Joseph hibernates in his room every night and on the weekends. He said he feels "safe" in his room and in his art work.
Joseph has one brother, Jacob (20) who is autistic with mental retardation. He is a big kid but has the mental capacity of a 10 year old. Joseph and Jacob's parents currently have been renting their home for 9 years so we have been given permission to change as much as we want. We plan on giving Joseph a place that he can feel comforted, safe, and creative. We are also going to do a small rehab of Jacob's room who often feels left out because of the attention that Joseph gets from his parents.