Meet Xander Smith. He’s 18 months old and was recently diagnosed with Dyskeratosis Congenita (DKC). DKC is a life-threatening and rare genetic disorder that affects his body’s ability to produce healthy blood cells. After months of tests and treatments, doctors confirmed that a Bone Marrow Transplant is needed to jump start Xander’s immune system. God has blessed us with providing FIVE confirmed 100% unrelated donor matches. But before we can schedule the transplant, there are few more battles to fight.

This journey has been heartbreaking and exhausting with long hospital stays, endless doctor visits, and emotional and financial strain on his family and extended family. We created this GoFundMe to help ease the financial burden on the Smith family so the parents can focus fully on Xander’s healing. All donations will go directly toward hospital and transplant related costs, antirejection and immune system medications, family travel and temporary lodging, and future medical expenses to maintain health. Funds will also be used to support Xander’s daily needs including diapers, food and formula, specialty clothing, and everything a little boy needs to be happy.

If you feel moved to give, your generosity will mean more than words can express. Every donation, big or small, will help ease the burden and allow us to give Xander the best future possible. But above all, we ask that you keep Xander and the entire Smith family in your prayers for strength, comfort, and complete healing. We are tremendously grateful to everyone.

Xander’s Journey

In early July 2025, Xander was admitted to Our Lady of the Lake Children’s Hospital in Baton Rouge, LA with a continuous fever. Over two weeks and numerous tests, it was determined that Xander had contracted Cytomegalovirus (CMV) and that his body was unable to fight it off. Ultimately, the decision was made to transfer Xander to Texas Children’s Hospital in Houston, Tx. It was here that he was diagnosed with the rare and incurable genetic disorder DKC. For the next four weeks, Xander received some of the best treatment and care from some of the nation’s leading experts. It was during this time that it was determined that the Bone Marrow Transplant was necessary to save Xander’s life. He was eventually transferred back to OLOL Children’s where he continues to receive round the clock care knocking down the CMV counts.

A CMV resistance test was performed on the 5 antiviral medication that are available to Xander. Three out of the five came back resistant, two of which he had previously been taking and leaving only two options available. One medication is marketed for adults and has only a handful of case studies involving children (none of which are Xander’s age). The other medication is used exclusively for post-transplant treatment due to the risk of developing resistance before the transplant; if that occurs, the transplant will not proceed.

His amazing doctors in both Baton Rouge and Texas have worked around the clock, jumping through countless hoops and filing one emergency appeal after another to get the drug approved for the hospital’s use. Praise God, on Monday, October 13th, they did it and the drug was shipped to the hospital the very next day. Xander took his first dose of Maribavir the following Tuesday evening. He takes it two times a day and absolutely despises it. Based off his behavior and energy levels, we have high hopes that the drug is doing its job. They re-tested his CMV levels weekly so we can track his progress. For Xander to move to the transplant phase, we have to get his CMV levels back to “undetectable” (below 260).

Once the CMV count is undetectable, Xander and his parents will immediately be off to Texas Children’s Hospital for the Bone Marrow Transplant. We expect Xander to be there anywhere from 6 months to over a year. God willing, we should have a healthy Xander back home sometime in 2026, hopefully sooner than later.

Speaking for Xander, his parents and everyone who loves him, I want to say THANK YOU for your thoughts, prayers, and continued support.