NEMO Gene Archive

After 81 days in the hospital, Jack is going home with a new immune system! He lives IMMUNE! Go Jack!

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Jack is showing signs of engraftment according to today’s blog from his Mom Charlotte. Jack’s on day +46 post-transplant and his new cells are coming. Go Jack! Unfortunately transplant is not like a sprint, its more like a marathon… Go Jack! Here’s a picture of Jack with Dr. Orange:

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Jackson is in the news! ABC News Channel 13 Houston talks about Jackson and his family today. Here are some highlights of the story: You could be a match for Jackson by Christi Myers Imagine learning that your baby has a genetic mutation that will keep him from living

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Simon’s Mom posted an update yesterday. She said, We ask for prayers and support for us to get through this all. We have never asked for help for anything but this time we have no choice. We cannot do all of this alone. I’m trying to work from the

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Simon received Marriana’s stem cells yesterday 10:30 am. CONDITIONING -> CELL INFUSION -> ENGRAFTMENT -> BREAKOUT DAY Simon’s Mom is requesting the following prayer: If you want to pray for us, pray that he has engraftment over the next few weeks. In this time of renewal and time of

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I found this clinical research protocol at the NIH website today. They plan to enroll 600 people with x-linked hyper IgM Syndrome (CD40L gene) and NEMO gene mutations. Six hundred sounds like a big number… Study Type: Observational Study Design: Natural History Further study details as provided by National

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Please help Simon. I introduced Simon here three days ago. He’s almost six months old, he has NEMO and a compatible sister. He’s in the middle of his stem cell transplant, he’s receiving chemo infusions right now to get rid of his immune system and replace it with the

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Simon is almost six months old, he’s from Chicago. Simon has NEMO, diagnosed 38 days ago. Simon is starting conditioning (chemo therapy) tomorrow for a stem cell transplant. Simon will receive stem cells from his sister, she’s a full match. Please keep Simon in your prayers. Chemo should only

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Jackson is a boy from Houston Texas with NEMO. He has spent more than 6 months of his life in the hospital with infections. He has ectodermal dysplasia with a primary immune deficiency, similar to Andy. He has had a lot of infections, mostly bacterial infections (sepsis and bacterimia)

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I received the following comments today from Jackson’s Mom: You and your family are such an inspiration to us. Whenever I feel overwhelmed, I remember that you’ve already been through this, and I’m inspired by your positive outlook and your courage. And it’s mutual… More about Jackson soon.

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