My son Noah was born March 18th 2020 at 25+1 with Beckwith-wiedemann syndrome anda omphalocele containing only his bowels. His O was repaired a week after birth 

he fought and fought. He had many surgeries (omphalocele repair, hernia repair, tracheotomy, PEG tube, liver biopsy, tongue reduction) and procedures ( two spinal fluid meningitis checks, broviac placement, two PIC lines and many blood and platelet transfusions)   He also had many infections (pneumonia, fungal sepsis, Klebsiella twice)

noah was diagnosed with hepatoblastoma a few weeks ago, it was very aggressive and growing so quickly (five solid tumors). We had a care conference with his team where they explained possible treatments. Noah was set to start chemo the day he passed. He had very low platelets (that are being investigated by an autopsy) and was in a lot of pain

Wednesday august 5th, Noah’s dad and I made the very tough decision to take him off life support. Noah passed away in his mamas arms where he was comfy and safe. We bathed him, dressed him, cuddled him and made sure he was loved.

your donations will go towards his urn, cremation , family financial relief and a medical bill before he got insurance.