On the morning of May 31st 2023 our sweet boy Roman went home to be with Jesus. Our handsome little warrior passed peacefully in his sleep in our new home, surrounded by his family that loved him unconditionally.

Roman was born with a porencephalic cyst in his right temporal lobe due to having a stroke in utero. Porencephaly is an extremely rare condition that causes several underlying conditions. At birth he was diagnosed with Torticollis, hypotonia, nystagmus of the eyes making him permanently blind, hemangiomas, feeding abnormalities, and jaundice. He spent his first 17 days in NICU and came home with an NG tube so we were able to feed him. Then, at 6 months old, Roman’s cyst had more than doubled in size; he underwent brain surgery via endoscopy to drain the cyst (January 2022). The surgery was successful, however Roman contracted Covid while at the hospital. Three days after he was home from brain surgery we had to rush him back to Mott’s Children’s Hospital. We stayed there in quarantine for 12 nights and 13 days. During that time, Roman nearly lost his life. He had respiratory failure and had to be intubated; he went into bradycardia. I begged God to let me keep my son. He answered my life’s greatest prayer and our boy pulled through. In the days following, he had 2 seizure episodes and was diagnosed with epilepsy, centralized diabetes insipidus, and adrenal insufficiency causing him to be cortisol dependent. He left the hospital on 5 different medications. In April of 2022, he graduated from the NG Tube to a G-Tube as his feeding ability hadn’t improved. He underwent another surgery and we had to take classes to learn how to use it. In the following months Roman showed excellent improvement. He underwent helmet therapy to correct the improper shape of his head. He went to speech, physical, and occupational therapies weekly. We maintained his follow up appointments with his neurology, endocrinology, neurosurgery, dietician, ophthalmologist, PMR, and dermatology specialists; driving what felt like millions of miles back and forth to Ann Arbor from Midland. Regardless of all the pokes, the tests, the therapies, the infusions, transfusions, central lines, pick lines, atrial lines… despite it all, my son smiled. Our son’s smile lit up the world. After several months of improvement, Roman was able to be weened off 2 different medications. Roman was also able to have his G-Tube removed as he had learned to hold up his own head and eat food by mouth (February 2023). He made so many strides but still had some challenges. He was sick and hospitalized 3 times this year (January, March, and April 2023). He had gained enough weight that he outgrew his medication doses. Roman had several seizure scares and high fevers during those 3 hospitalizations. The last episode in April, Roman nearly lost his life again. He was admitted to ER after waking up with 108 degree fever. He had to be airlifted to Ann Arbor. Our little fighter pulled through once again. He survived because Roman means strength.

The last month of his life has been fantastic. Roman got his wheelchair and it enabled him to see life in a whole new way. He was able to play with toys, eat more solid foods, drink more water, increase his activity and play time. He was so excited and seemingly proud of himself in his new chair. He was speaking words, saying “I love you” and learning the names of loved ones. He was the most extraordinary, miracle gift from God. Roman defied all the odds since day one.

My soul is shattered. My heart broken. Our family just moved into a new home over Memorial Day weekend, as it was larger and provided all our kids their own bedrooms. I’m grateful we were able to enjoy our first weekend together as a family in the new house before Roman took his last breath on Wednesday morning.

The hard and honest truth is, we spent every dollar we had to move into the new place. Between that and all the extra travel expenses to Ann Arbor this year has left us broke. We have no way to pay for our son’s funeral or final medical expenses.

My heart aches to ask for help when so many of you have already helped us so much through our journey. It really does take a village to raise a child, especially one with needs as extreme as Roman’s. I’m asking, with a humble heart, for help just this last time. Roman touched so many lives. He gave people hope and a reason to smile. He reminded the world to do all things in love. Roman deserves a proper burial and a place to rest in peace after all the fighting, the battling, and the strength his life requires of him. I’m absolutely devastated that I am unable to give him this final gift…. I’m calling on my village, with gratitude and humility. Please help me lay my boy to rest with grace and dignity. Thank you, all of you, for your love and support. #Romanstillmeansstregth