Lane's Fight with Fanconi Anemia

Update: Lane underwent his transplant on June 8th. The transplant was a great success and his brothers cells graphted quickly! Unfortunately a little to quickly, and they began attacking Lanes body. He has required high dose steroids to calm them. This has caused his muscles to weaken and his lung function to really suffer. Lane was discharged to the Ronald McDonald house near the hospital for close monitoring. Unfortunately he was readmitted withing 4 days. He was in terrible pain and passing very large blood clots. He had a virus that was attacking his bladder and making the inside raw. While he was admitted doctors discovered that Lane had developed one of the worst possible complications of transplant. Called TMA. Thrombotic Microangiopathy (often known simply as TMA) is a rare but serious medical disease.

"It is a pattern of damage that can occur in the smallest blood vessels inside many of your body’s vital organs – most commonly the kidney and brain." It can lead to organ failure. Lane was immediately started on twice a week infusions of Ecluzamab to try and stop this. He was finally discharged back to the Ronald McDonald house with daily clinic visits and twice weekly infusions. Slowly he was responding to the infusions and they were decreased to once a week and then every other week. Lane was FINALLY able to come home Sept 28th just in time for his birthday. Unfortunately when he had his follow up at Duke the next week, everything was moving in the wrong direction again. His kidneys are not handling the stress, his retaining fluid, his blood pressure has been climbing. His white blood cells and platelets are dropping. He has started having multiple nose bleeds a day. He is now back to weekly infusions and 2-3 clinic visits a week. As much as they are happy to be home, financially this continuing to take such a toll on them. The trip from their house is 3.5hrs each way, 7 hours round trip, and approx. $100 in gas each trip. They are continuing to miss work due to his demanding treatments. If anyone is able they could REALLY use your help. Please keep them all in your prayers and if your able to help financially, I thank you from the bottom of my heart!

For those of you who don't know, my nephew Lane was recently diagnosed with Fanconi Anemia. Fanconi anemia (FA) is an inherited DNA-repair disease that may lead to bone marrow failure (aplastic anemia), leukemia, and/or solid tumors. This affects the body's ability to repair the DNA. Unfortunately, this is not curable.

Lane will be receiving a bone marrow transplant. The bone marrow transplant process is going to be extremely rough on him. He will have to undergo 30 days of chemo at Duke University Hospital before the transplant and then remain in the hospital for two months after the transplant while hopefully, his new marrow will begin to function properly and not be rejected. Afterward, he will need to stay near the hospital for another 3 months for close monitoring. He will face a long road of multiple specialists to manage its effects on every part of his little body.

This is something no child or parent should have to endure. While I understand we are all in trying times, to help my sister and her family alleviate some of the financial stress; please consider donating. If you are unable to donate, please keep Lane in your prayers as he goes through this fight. Thank you all so much for the support!