Nick

Clara Jane passed away at 6:44pm CST 6/9/25 peacefully at the Children's Hospital in Wisconsin. She was only 13 days old but made a huge impact on everybody she met. This is the most difficult thing my wife and I have ever had to endure. We wouldn't wish this feeling on anyone. Our hearts are crushed. Thankfully, we know Clara will be met in Heaven by family members who will give her all the love we would of had she stayed with us. Thank you to everybody who kept us in their prayers. Once we take everything in to account we may end up putting up a GoFundMe and ADA Wallet to help us pay for her end of life arrangements for anybody who is looking to chip in. We haven't decided yet.

Update on Clara: With every passing day she's able to eat a little bit more, and gain a little more strenth to open her eyes and try to cry. Yesterday we finally got some answers. Our first round of genetic tests came back. Clara has something called Hereditary Hemorrhagic Telangiectasia (HHT): a genetic disorder which manifests itsself as abnormalities in the blood vessels. In HHT, arterial vessels flow directly in to the veins, and the additional pressure can cause bleeding. This genetic disorder accounts for almost all of the symptoms she has been experiencing, (as well as the visual skin irregularities you see on her face and head) and the brain abnormalities. This is inherited from a parent with the disorder - so myself or my wife likely also has the condition and we never knew. It was probably mild, and we never experienced major issues with it. When the additonal genetic tests come back in ~2 weeks we should know more. Our next steps are to search for AVM's (abnormal connections between arteries and veins) within her body such as the lungs, brain, and GI tract - and if any are found get her in for remediation immediately. At least we have some answers now and have a way to move forward. Keep the prayers coming, they've been helping!