NEMO Gene Archive

This from Conners parents: UPDATE: WE JUST RECEIVED WORD THAT CONNER IS 100 PERCENT ENGRAFTED!!!! ALL OF THE CELLS WORKING SO HARD ARE DORY’S AND IF HE STAYS HEALTHY AND WITH A LITTLE GOOD LUCK HIS TRANSPLANT WILL BE A SUCCESS! CONNER IS OFFICIALLY CURED OF HIS NEMO DEFICIENCY!

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This from Rhys Dad, “Unfortunately Rhys was admitted into hospital yesterday, it looks as if the TB Avium is rearing its ugly head, his body has done so well in keeping it at bay for so long.” Boys with some types of NEMO have a big risk for mycobacterium infections.

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Article via Journal & Courier here. Conner’s website here. Road to curing Conner leads to upcoming transplant By DOROTHY SCHNEIDER It was just a common cold that landed Conner Smith in the hospital about 3 1/2 years ago. But his body couldn’t fight off the germs. Doctors soon discovered

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A bone marrow match has been found in the United States for a six-year-old south Wales boy with a rare disease affecting his immune system. After a worldwide search for a donor, Rhys Harris, from Newbridge, in Caerphilly county, will undergo treatment in Newcastle in September. Even though the

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I received this email from Rhys (www.cure4rhys.org) ad a couple of days ago: I have just had a phone call from Newcastle!!? They have found a match for Rhys in America, not perfect but good enough for them to reserve it! We still have the World Record to break

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The first ever talk about NEMO. Immune Deficiency Foundation conference at St. Louis by Dr. Jordan Orange Pioneers: someone who went to an area before it was settled.

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Congratulations! Simon celebrates six months post transplant! This from Simon’s Mom: Celebrate today with us as it marks our six month post transplant on our calendar. We are very blessed to say we have managed to stay home, be together, watch Simons immune system heal and hopefully start to

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Giovanni is home! Dr. Sung-Yun Pai did it again. KNOCK ON WOOD. Story via Concord Monitor here.

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Praying for Simon. This from Simon’s Mom, I cannot believe I am even posting this, almost a year to the date of us going home last year after transplant number one, I am asking that you pray long and hard for our son this weekend at one of the

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Day + 21 post transplant and had to be transfered to the ICU due to breathing complications. This from his Dad: The roller coaster of terror continues. This is the time when you dred each phone call, each lab, each examination, a groan, the twist of his body, the

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