Luca Birthday Letter: By: Devin Hefele (Luca's Uncle)

Dear Luca,

Hey buddy today is the day I tell you how much I miss and care for you. I don’t think I properly got to tell you when you were here. I was so shocked with how beautiful you were and I was too choked up for words. I along with thousands of other people anxiously waited to meet you for you for 9 months. While still in the womb, In September of 2014 my sister Rachel and her partner Jeff received the news that you had acrania. This is a lethal diagnosis when the baby’s skull doesn’t form correctly leaving the brain exposed. Doctors said this diagnosis has no cure; it’s 100% fatal. When we received this devastating diagnosis we were all shocked, but your mom and dad became your biggest fighters. Luca, you are probably the most loved baby I’ve ever got the pleasure to meet. Your parents turned your life into a celebration.  They chronicled a weekly blog sharing your story with the world and celebrating you. They also wanted to spread awareness to this rare and devastating condition. By doing so, your blog, Facebook page, fundraisers, t- shirts and wristbands helped to create awareness and raise money to help find a cure. Your parent’s goal was raise awareness and save your life. 

The doctors told your parents that you weren’t going to make it. Many doctors said it was impossible, but that didn’t stop your mom and dad. They took the bull by the horns and said our baby is not going down because another doctor told me he is. They never lost hope Luca. You have the greatest parents of all time because they didn’t give up and terminate the pregnancy buddy. 

The night before your birth our family and friends released lanterns into the night sky; we all said a prayer for you. On February 11^th the Team Luca supporters gathered at St. Mary’s Hospital anxiously waiting for your arrival. After you were born, we received amazing news that you were stable enough to go to Cardinal Glennon Hospital. This was a true miracle since most acrania babies do not survive outside of the womb. Within an hour of being born you started to struggle. You couldn’t breath on your own and we were told that you would spend the remaining moments of your life in all of the arms of those that love you the most. I honestly didn’t think I could handle it, but then I saw you for the first time I couldn’t help to stare. I was completely in awe of you. You were 5 pounds 8 ounces of pure love and I know your mom will agree with me. When your mom asked me if I wanted to hold you I was so nervous, but the moment I held you for the first time it changed my life forever. I looked up at your mom, looking her in eyes I could sense the joy of you being in our presence and the pain of your early departure. 

We’ve always said that you are strong as a lion. A lion shows strength bravery and leadership, Luca doctors doubted you and I think you and God made an agreement that you weren’t going down without a fight.  At 12:40 pm you curled up in your mom and dads arms and went to heaven. You lasted a whole FOUR HOURS, a large feat for acrania babies. Do you know how much strength and bravery that took buddy? That’s why you’re as strong as a lion and that’s why I will forever wear this wristband in your name.

I feel like you’re in my presence every day. I can still feel you in my arms. My sister told me she promised you she would find a cure for your diagnosis. I’m going to do everything in my power to help her. Luca thank you for staying so strong and giving my sister and all of us the pleasure of meeting you. I promise you I’m going to stick by her side and we will figure this out together. I never want to see it happen again buddy. I love you and I love my sister. I am going to stick this journey out until the day I get to hold you once again. You are my bright light in this life. Luca Joseph Hill, you changed my life forever and thanks to you I feel more closer to my sibling’s than ever. Thank you for creating so much love and passion and thank you staying strong like a lion Luca. We love you; its never goodbye its see ya later. 

Happy Birthday Buddy

-Uncle Devin

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