Our family is facing a heartbreaking reality. Rodney, our loving and courageous 16-year-old great nephew, was born with cerebral palsy and has spent his life overcoming challenges with incredible strength. Recently, he received an additional diagnosis: TUBB4A-related leukodystrophy, a rare genetic disorder that attacks the nervous system. It has caused Rodney severe pain, uncontrollable spasms, and a rapid decline in his health. After a brief rally when he returned home from the hospital, Rodney’s condition worsened. Yesterday, his medical team shared that he has approximately two weeks left with us.

As we focus completely on keeping Rodney comfortable and surrounded by love, we are also faced with the overwhelming cost of preparing for his final arrangements. We are humbly asking for help to cover final expenses and memorial costs, transportation and service arrangements, and any remaining comfort-care or medical needs during this time. No family is ever prepared for this. Any contribution—no matter the amount—will make a meaningful difference and ease an enormous burden during our most painful moments.

If you’re unable to donate, sharing this page or keeping Rodney in your thoughts is just as appreciated. Thank you for your compassion, your generosity, and for surrounding our family with love as we cherish the time we have left with Rodney. With gratitude,