Lilah’s Story

Site created on July 14, 2018

Welcome to our CaringBridge website. We are using it to keep family and friends updated on Lilah’s condition. 


Lilah was diagnosed prenatally with a congenital heart condition called Tetralogy of Fallot with Absent Pulmonary Valve Syndrome. Babies with ToF require open heart surgery typically within 4-6 months of life. However, since Lilah has the added Absent Pulmonary Valve diagnosis, she will most likely have added complications with her breathing and may require surgery much sooner. 

Newest Update

Journal entry by Sara Mather

What am I grateful for this year? I don’t think I could even list all the reasons without this post being pages long. First and foremost, I’m thankful to all of those who continue to support us through the hardest year of our lives. My family and Jake’s. Our parents and step-parents have been amazing, our grandparents, brothers, sisters, cousins, sister and brother- in-laws, aunts, uncles-everybody! All of our friends, every single person who sends a message or buys a Lilah shirt or just wishes us well. For all the financial help we’ve received so that I can see Lilah every single day. We’re thankful, grateful and blessed to have you all. I’ll never forget your kindness ❤️
 
I’m thankful for Lilah’s brilliant medical team. For the people with so much intelligence that they use it to SAVE LIVES. The Nurses who care for Lilah like she is their own. The incredible technology that allows little hearts to be operated on with huge successes. 
 
I’m so very grateful for my other two beautiful children who have kept me smiling throughout this journey. 
 
I’m blessed beyond belief with a hard working man who loves me. Who lets me act like a total brat when I’m overwhelmed and sad and stressed 
 
Mostly I’m thankful that even though I have to visit a hospital to see my daughter today, that she is still here and she’s making progress every day! She’s beating the odds and I’m so thankful to be her Mama 
❤️❤️❤️
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