Danton’s Story

Site created on September 19, 2018


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So Ive had a few new friends pm me on what is Dantons disease. Danton has a rare complex condition which can only be cared for by an ACHA(Adult Congenital Heart Associated Group of Drs and facilities) not all hospitals will handle his care, so we cant just go anywhere. The short version of his condition is; Double Outlet Right Ventricle Septal Defect with Transposition of Great Vessels and occulded malformation of vena cava! Babies like him 32 years ago didnt live. Here he is at 32, one of longest living documented. His story is a long one. We just had end of life options talk with team, but not our “first rodeo” Danton is now starting with the Transplant Team to be assessed and placed on status. We will soon travel to Philadelphia where a one of a kind procedure is being done there to help fluid in abdomen be removed. Danton has many research studies/articles about him, as his longevity gives great hope to new babies born with rare heart conditions. Hope this brief note sheds some light and during this season especially lets you know there are miracles walking around us, every life is a blessing!

Newest Update

Some pics from the doctor

Journal entry by Jessica Lucas —

The top is the top blockage, the second is bottom blockage. The last pic is the stents and coils opening and rebuilt vena cava
Read More of the journal titled "Some pics from the doctor"
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