Waylon was just diagnosed with Fanconi Anemia, a very rare blood disorder that causes bone marrow failure. Waylon has a long road ahead, and there will be lots of battles to overcome. He will be traveling to Cincinnati for more procedures and tests, and will be traveling to Charlottesville regularly. This will be a very difficult time for the Means family. Please, if you feel led to give, help us raise as much as possible for this family.

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From his mother - Lauren: ⬇️

Over the past 3 years we have been to several specialists at UVA concerning Waylon. Mostly for minor, seemingly common things that he just so happened to have. Through the process we learned he has Growth Hormone Deficiency which is why he is so short for his age. From there we were referred to genetics and had several tests done, the latest test has confirmed a diagnosis of Fanconi Anemia, a rare blood disorder that causes bone marrow failure. He has mild symptoms so far, so we have been lucky to say the least. Last week we had our first set of labs done since 2018 when they were normal. At this time, they are not. Which insists that Waylon’s bone marrow is not functioning as it should. So this morning he had a bone marrow biopsy to determine the integrity of the bone marrow and see where we stand. He is out and doing fine, eating pizza & ice cream and being his normal joking/silly self. ❤️

Fanconi anemia can also cause solid tumors on some of the major organs so we are having scans done to determine a baseline for comparison later and to be sure everything has developed correctly so far.

His renal ultrasound was completed last Friday and came back normal!

I’m posting a link to the hospital that serves as the world leading experts on this condition and treatment to help others who are following/praying for Waylon to understand exactly what this is and what’s going on. This is the same hospital that our new hemotologist/oncologist at UVA just so happened to study under. He also specifically specializes in bone marrow transplants and children with Fanconi Type A, which is what Waylon has. And you tell me that God isn’t working ☺️

https://www.cincinnatichildrens.org/health/f/fanconi-anemia

The more I’ve learned, the more I’ve prayed, and the less afraid I have become. Because we have an amazing God. One that has guided me with peace, strength, and joy through this entire process. You see the word joy… and even as I’ve felt it over the past several weeks I’ve waited. Waited for the anxiety, waited for the breakdown, waited for the anger, all the emotions I *thought* I would have when I saw and heard about all those -other- stories on Facebook. You know, the ones that never happen to us. Right now, today, I have an amazing, smart, healthy, happy, and thriving little boy. And I won’t steal today from him, from myself, or from my family by allowing those things to creep into my mind. I would be lying if I said they haven’t tried to, but then I pray. And I pray hard. Harder, and more often than I ever thought I could. Because I KNOW God is good, I KNOW he works ALL things for good. Why? because I know he is reliable, good, loving, perfect, holy, and trustworthy. I know I can trust Him with my little boy, who is actually His little boy too; and I take great comfort in knowing that. ❤️