Help Xayne Fight for His Health â¤ď¸
Our family is asking for help for an incredibly special little boy who has been fighting a medical battle most childrenâand most familiesâcould never imagine.
Xayne is 8 years old, and he has spent much of his life in and out of hospitals. After years of testing, appointments, procedures, and uncertainty, we received devastating news in May 2025: Xayne has a rare KRAS gene mutation (KRAS NM_004985.5). With more than 50 tumors and lesions all over his body.
What makes Xayneâs case even more extraordinary is just how rare it appears to be. To our knowledge, this specific KRAS mutation has never been medically documented in a person without cancer, particularly in a child. KRAS is a gene that helps control how cells grow, divide, and survive. When a KRAS gene is mutated, it can send abnormal signals that cause cells to continue growing and multiplying when they shouldnât. In Xayneâs case, this abnormal cell growth has resulted in tumors and lesions developing throughout different areas of his body, affecting areas such as his legs and even growing into the bone. Because his condition is so rare, doctors are still working to understand exactly how this mutation is affecting his body and why these growths are developing in different locations.
Xayne does not have cancer, and we are praying with everything in us that he never will. â¤ď¸
His legs are constantly bruised and are where he experiences much of his pain. He has a large tumor underneath his left knee that has now grown into the bone. His doctors do not believe the tumors can safely be removed because of the concern that they could return.
For an 8-year-old, this is an unimaginable amount to endure.
Yet somehow, through all of it, Xayne continues to smile, laugh, and fight. â¤ď¸
Xayne is followed by multiple specialists at UNC Childrenâs Hospital in Chapel Hill, Duke University Hospital in Durham, and specialists in Charlotte. My sister is constantly traveling from appointment to appointment with Xayne for testing, treatments, consultations, and follow-ups, trying to understand a condition that is so rare that there are very few answers to be found.
Last July, Xayne began taking chemotherapy tablets as part of his treatment. The side effects have been extremely difficult for him. He has always been an active child, but as his condition has progressed and the treatments have taken their toll, he has slowly lost some of the ability to do the things that once came naturally to him.
But there is hope. đ
After everything Xayne and my sister have been through, they received what feels like a tremendous answered prayer: Xayne was accepted into a medical study at the National Institutes of Health (NIH) in Maryland.
At NIH, Xayne will spend an entire week undergoing extensive testing, examinations, and evaluations with multiple specialists. Because his condition is so rare, this opportunity could be incredibly important in helping doctors better understand what is happening inside his body and, most importantly, determine a possible treatment plan and path forward.
For us, this week represents hope.
But getting Xayne to Maryland and being there with him for an entire week comes with significant financial challenges.
My sister has been carrying the weight of this journey while also facing medical issues of her own. She was out of work for more than two months while recovering from back surgery, and she has since used all of her available vacation time. Xayneâs father passed away several years ago, so she has had to navigate this incredibly difficult journey as a mother doing everything she can to make the best decisions possible for her son.
She has never been someone who asks for help.
She is usually the person helping everyone else.
As her family, it is difficult to watch her carry so much and not ask for anything in return. So we are asking for her now.
We are raising funds to help with Xayneâs medical expenses and the travel, lodging, meals, and other costs associated with getting him to Maryland and allowing my sister to stay by his side throughout this critical week.
We donât want my sister worrying about how she will work remotely, pay bills, or cover expenses while she is sitting in a hospital with her son. We want her to be able to be exactly where she needs to be: beside Xayne.
This isnât simply a trip to another hospital.
This is an opportunity for specialists who are studying rare conditions to spend an entire week evaluating a little boy whose genetic mutation may be extraordinarily uncommon.
We donât know exactly what answers will come from this study. We donât know what the next step will be.
But we do know that Xayne deserves every opportunity to find them.
If you feel led to donate, no amount is too small. Every contribution will help take some of the financial weight off my sister and allow Xayne to get the care he needs.
If you arenât able to donate, sharing this fundraiser is just as meaningful. And above all, we ask that you please keep Xayne and my sister in your prayers. Pray for healing. Pray for answers. Pray for strength for my sister. Pray that the doctors at NIH will discover something that can give Xayne a better and healthier future.
We believe in miracles. We believe in hope. And we believe that with God, anything is possible. đâ¤ď¸
Thank you to everyone who has prayed for Xayne, encouraged him, supported my sister, shared his story, and loved this sweet boy through one of the hardest journeys imaginable.
Please help us give Xayne every chance to keep fighting. â¤ď¸
#PrayForXayne
