Imagine having a child with complex medical conditions that warrant your attention every minute of every day. Now imagine you have two children in this situation. Sara and Steve Smith are the parents of Brave Brothers Caleb and Oliver. Sara and Steve are amazing parents, but they are continually forced to face unimaginable circumstances due to the boys’ health. Sara drives her 2005 van which doubles as the “family ambulance” to all of the boy’s appointments. Steve has done a great job of maintaining the vehicle, but given its age and wear/tear it is requiring a major overhaul that Steve doesn’t have the time to do given some pretty major medical issues they are facing at the moment. Oliver does best when he can use his wheelchair which means a minivan would be ideal for them. The goal is to get a new minivan that won’t require continuous maintenance and hopefully eliminate “just one thing” that weighs on their minds daily. Caring for the boys is their priority and leaves little time for anything else. To provide a “nutshell” explanation of their health issues, Caleb and Oliver were both born with severe congenital heart defects. Caleb was born on September 30th, 2001 with Tetralogy of Fallot with absent pulmonary valve syndrome, DiGeorge Syndrome and a handful of other medical anomalies. He's had four open heart surgeries and one attempted valve install via cath that did not work. His second open heart was very long and he was on bypass for way too long. His parents found out later that he actually woke up during the open heart surgery and was able to describe it in a nauseatingly accurate fashion. This incident caused brain damage with "significant loss of gray matter". This changed everything about Caleb, his PTSD is severe. Since then he's had bilateral hip surgery to put three screws in each hip because the ball was breaking off both sides and he was diagnosed with Spina Bifida Occulta with a tethered spinal cord. He was also diagnosed with Tourette's Syndrome and has many extreme behavior issues. Oliver, who just turned 17, was born with Truncus Arteriosus type 1.5 (later upgraded to 2.0). First open heart as an infant then at 7 months he got a fever that wouldn't go away which turned out to be HLH (Hemophagocytic Lymph Histiocytosis). They gave him a 3% chance (yes, 3) of even making it to transplant. Eventually, a 4/6 match was found (6/6 would have been way better) and had his bone marrow transplant just before his first birthday. Because of the less-than-perfect match, GVHD (graft vs. host disease) has messed with Oliver for his whole life. His lung disease is horrible, he's only had two open heart surgeries, then had lymphoma about three years ago. Just recently Oliver was diagnosed with Adenocarcinoma presenting as a tumor that lies between his liver, pancreas, bile duct, intestine, and a large vessel. In short, being able to get a new van would be a huge stress reliever so Sara and Steve don't have to worry about reliable transportation to the boys' numerous medical appointments. If you can donate, that is fantastic. If you can’t, please share.
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