Help Baby Frey overcome HLHS and DBA
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In May Bethany and I discovered news no expecting parents ever want to hear. Something was very wrong with our baby's heart. Throughout May and June, we went through multiple tests, ultrasounds, and Dr visits. By the end of June, we had the final diagnosis. Our son has something called Hypoplastic left heart syndrome (HLHS). What on earth is that? Well, we asked the same thing. HLHS is a severe congenital heart defect in which the left side of the heart is underdeveloped. Our son will need a series of life-saving surgeries for him to have a chance of survival. The first surgery is called " The Norwood Procedure" It will take place within the first 3 days of being born. The second surgery will happen when he is about 6 months and the 3rd one when he is about 2 years old.
On top of this already rare condition, our son also has something called Dimond Black Fan Anemia (DBA). I was also born with this blood disorder and have been in remission since I was 8 years old. Our son is going to be a very complicated little guy. However, we have so much hope for what can happen to give him the best chance of life.
We are trusting God to walk us through this journey. God has opened the door for us to go to one of the best hospitals in America for him to receive his care. We will temporarily relocate to Philidelphia to have him at the Children's Hospital of Philadephia (CHOP).
Bethany and I have good insurance through Disney but we are still responsible for hitting our max out of pocket for the year which is $8,000. We were not expecting to have to hit that both in 2024 and then again in 2025 totaling $16,000. Bethany will also be out of work much longer than expected and will only be partially paid time while on maternity leave.
Bethany and I have started this page because we know we can't do this alone. These next few years are going to be a long journey for us. Many people have asked how they can assist. Would you please consider helping us with our medical bills that will come up due to this situation? We hope to raise $16,000 for medical expenses and another $9,000 to help cover lost income due to Bethany being out of work for at least 6-7 months.
We appreciate everyone praying for us. We still have a long way to go. However, we trust our Heavenly Father, knowing He walks with us through this journey. Please feel free to share this page with others who can pray for us and with those who would also be willing to give.
Below is a link to our CaringBridge site so you can continue to follow along and read more details about our journey.
Organizer
Josiah Frey
Organizer
Orlando, FL