Support Lily Rose's Fight for Life

Hello beautiful people! My name is Shannon Bellew and I have felt led to help this beautiful, wonderful family. Sit tight and try to keep up!

Katy and her wonderfully supportive husband Tristan, along with their adorable son Slater, welcomed the birth of their new little angel Lilith Rose on March 13th, 2024. However, their joy and happiness was suddenly shattered when Katy realized she hadn't heard Lily's little voice yet. Lily was cyanotic and having issues breathing, the nurses told them she had swallowed some fluid during birth and was immediately moved to NICU. They were told Lily had a heart murmur. Little did they know that this was only the beginning of what has quickly become this beautiful little family's most challenging nightmare! Lily has become an astounding 1 in 15,984 babies introduced into this world with a rare congenital heart defect called Truncus Arteriosus Type 1. Not long after she was born, Katy and Tristan were informed that Lily only had one kidney, no gallbladder, and duplicate reproductive organs. Doctors immediately got Lily into their cath lab to perform a palliative surgery of installing flow restrictors. This procedure would help give them some time for her to grow before her first open heart surgery.

A few days after her procedure, they were again blown away to learn that Lily had suffered a grade 4 brain hemorrhage and consequently has now been diagnosed with Hydrocephalus ex vacuo and significant white matter damage. When Lily arrived at Children’s, her parents sent off for genetic testing due to her CHD, missing and duplicate organs. Weeks later, Lily would additionally receive the diagnosis of distal trisomy 8Q, also referred to as chromosome 8Q duplication. Although they are unsure exactly how this will affect Lily later in life, children with this abnormality typically experience developmental delays, learning difficulties, growth impairment, and skeletal abnormalities. Additionally, Lily was diagnosed with dysphagia and she is NG tube dependent. They patiently waited the 30 days for Lily to recover from this initial surgery and excitedly but exhaustedly finally were able to go home! May 6th was the day for her first big life improving open heart surgery to repair her VSD and single truncal valve and all things went smoothly but during recovery, Lily contracted staphylococcus aureus and post-operative endocarditis. Blood clots began to develop and Little Lily went into respiratory failure. She was intubated for respiratory support and taken back into the cath lab for a thrombectomy where they successfully removed some (but not all) of her clots. Then comes the diagnosis of acute atrial ectopic tachycardia which consists of numerous heart arrhythmias. Despite all the unbelievable, tragic, lethal yet thus far treatable diagnoses this poor little tiny angel has had to overcome in her short 130 days on this earth, her parents were trying to manage all of this tragedy while continuing to live a somewhat normal existence. No one ever plans for such a dramatically life altering chain of events especially when there was never any reason to believe their daughter was going to be anything other than a perfect new addition to their growing family. On top of all of these mind blowing challenges and despite his attempt to continue to provide for his family, Tristan’s long time employer AT&T decided that Tristan's attendance at work as of late was not acceptable enough to continue his employment with them and subsequently terminated him due to Lily's most recent brain surgery and Tristan's decision to support his wife and be at their daughter's surgery. At the same time, Katy has not only been struggling to understand all of these negatively life altering events but to also still be able to work in order to continue to provide for her family, pay her normal bills, Lily's new and exponentially huge medical bills and still be able to feed herself and spend time with once only child, Slater. Unfortunately, Katy has now been forced to resign from her position as there is never enough hours in the day especially when you've got such a brave little fighter on her hands! With ALL of these things being said this little family is in desperate need not only for good vibes, prayers and patience but also for the gut wrenching Almighty Dollar. It's only a short matter of time before their entire life as they knew it will cease to exist.

Friends and family, supporters and empathizers, haters and lovers, it is never easy to ask for help but I come to you this evening to beg, borrow and steal(jk) and ask y'all to really and truly reach deep down in those pockets, dig around in those couch and car cushions, pick up all those pennies laying around in all these parking lots and donate to this AMAZING but struggling family!! Please Help me try to at least ease one of these burdens off their shoulders even if for just 1 simple day!! No one should ever have to choose between their employer and their daughter's life, much less still have to stress about money for bills or food. Please help me feed my friends so they can more efficiently concentrate on spending time with their son and much less time trying to come up with dinner money!! Anything from a penny to a prayer is greatly appreciated!! Thank you to everyone who's already helped one way or the other and please know your assistance is not going unnoticed!!