08/18/2026
You never really know what someone is carrying until they bravely open their heart and tell their story. When they do, it makes you appreciate your own health, your own ease, your own ordinary days — but it also gives you the courage to step forward, to help, to offer whatever comfort you can.
This is Carson.
At 20 years old, Carson has endured more than any one person should ever have to. She and her twin brother, Cooper, were born at 31 weeks, and she spent 26 days in the NICU before coming home. At 3 months, she was diagnosed with Sagittal Craniosynostosis, and Cooper soon received the same diagnosis. At 6 months, both babies had cranial vault repairs — surgeries where the top of the skull is removed, cut apart, and rebuilt so the brain can grow safely. Carson would go on to have three vault repairs and an additional scalp surgery, in Milwaukee and later at NYU Langone.
At age 2½, Carson was diagnosed with Chiari Malformation, a disorder where the cerebellum slips into the spinal canal. That same day, her older siblings, Riley and Keegan, were also diagnosed. All three eventually needed brain surgery — Riley at 5, Carson at 3, Keegan at 7. Their mom, Cindy, was raising two sets of twins while living in and out of hospitals, traveling across Wisconsin, Illinois, Indiana, Ohio, New York City, and South Carolina for the surgeries and treatments her children needed.
As Carson grew, she struggled with bladder and bowel control. Testing showed neurogenic bladder and bowels, likely from Chiari nerve damage. At age 5, surgeons created a Mitrofanoff channel for her bladder and a Malone channel for her bowels. In 2017, her bladder was augmented at Columbia University because it could only hold the amount of a school milk carton. That same year, she received a Make A Wish trip to Disney World.
Constipation became severe in 2018–2019, leading to repeated hospital admissions and eventually a diagnosis of intestinal failure. Her colon was removed, then later an ileostomy placed. Leaks, pain, and fear kept her homebound, and depression and anxiety followed. Her Mitrofanoff began failing too, and her urologist recommended removing her bladder entirely. To do that, her ileostomy had to be moved so a urostomy could be placed.
That is the surgery she just endured — one of more than eighty in her lifetime. She has spent holidays in hospitals, seasons in recovery, and years fighting for the simple dignity of comfort.
Her story reminded me how important it is to keep people like Carson — and moms like Cindy — cozy, safe, and warm. I gave Carson a blanket, and her mom bought one soon after. But when she shared this journey, I knew she deserved one too.
This is why I’m asking for donations. For kids like Carson, for moms like Cindy, and for anyone who needs a little warmth and security to get through terrible things. And please — send prayers, healing vibes, and every positive thought you can spare to this family who has endured more than any family should ever have to face.
