Olivia Hope Burton

Our daughter Olivia Hope was born with a rare heart condition known as Truncus Arteriosus. This condition only affects about 1 in every 33,000 children. Unfortunately this was not detected in her ultrasounds or blood work during pregnancy, so to say we were unprepared is an understatement.

What this means for Olivia is that she will need heart surgery within about 30 days of her life. And due to the nature of the surgery she will need it again 2-3 more times throughout her life because the repairs will not grow as her heart grows. Also this surgery is very strenuous and according to the surgeons has about 100% chance of having some sort of complications. 10% of the time the child does not survive. They are also doing genetic testing to see if she has an underlying cause of this condition such as a syndrome. If she does she will likely have many other difficulties as she develops.

However we are not focusing on that. We are focusing on the good. We get to hold and feed her every day. We hold her as often as the wonderful people at the Cardiovascular ICU at John's Hopkins will allow us. We are so grateful for them and their treatment of our daughter.

We don't know how much all of this is going to cost us, but we do know we should get hit with a $5k deductible as soon as she is processed onto my insurance. The additional money will go into an account and be used towards any additional expenses that may arise such as purchasing any equipment we may need at home to monitor her, medication copayments, and everything else in between.

Thanks for reading Olivia's story. The support we have received so far has been tremendous and we are more than grateful to each and every person that has reached out.
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Matt Burton 
Tampa, FL
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