In addition to HLHS, Bodie has CPVT (Catecholaminergic polymorphic ventricular tachycardia). CPVT is an adrenaline induced heart arrhythmia. This very rarely accompanies HLHS (as in, there's a less than a 1 in a million chance). He inherited CPVT from his father, and it has caused significant issues for them both, including cardiac arrest at the age of 41 for his father. It is exceptionally rare for one individual to have both things.
Over the course of the last 7 years, in addition to Bodie's medical issues, Dusk has had both of his hips replaced (at 39 years old) and a cardiac arrest (at 41 years old). Sadly, the Bennett's home was also burglarized and then they lost their home to a house fire.
If that wasn't enough, Dusk is also in constant daily pain from his hip replacement. He has to get regular therapy just to keep the pain manageable. Additionally, the Bennetts are in a nasty lawsuit with the doctor who did that hip replacement. Dusk wrote a negative yelp review about his experience and the doctor went after them to remove the review. He couldn't sue them for that, so instead he's suing them under a contract issue (he warranted that he was in network, but billed from an out of network office, and is suing for the amount the insurance won't cover). Because it's not an open and shut case, they are now in the position of paying him $15,000 now to settle or risk going to court and losing - and having to pay hundreds of thousands of dollars.
Additionally, the stress of Bodie's medical issues, Dusk's medical issues, the lawsuit, and life ..... this has also affected Amy's badly herniated disc in her lumbar spine. Also, in the midst of all the stresses, their refrigerator stopped working around the holidays and a couple weeks ago Amy's car had an unfortunate run in with a rather large concrete column.
And again, if that wasn't enough, the IRS is holding onto their 2014 tax refund due to some identity theft issue.
********** This family can't catch a break. ************
So let's please show them our love - if you know them, or your humanity - if you don't know them. Let's show them there are stars in the darkness.
At this point, relieving some of the financial burden NOW is a start....Let's try and at least reach $15,000, but shoot for beyond that number.
Amy writes a beautiful blog that follows this wonderful and strong family's journey with their sweet boy.