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! …
Family & Friends
Prayers for Rhys
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. Rhys was supposed to go to…
Bone marrow match found for Rhys @ BBC News
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 match is not perfect, the donor’s…
Dr. Jordan S. Orange at the cover of the IDF Newsletter
What a great surprise to see Dr. Orange at the cover of The National Newsletter of the Immune Deficiency Foundation. It means that the IDF is doing things right.
Simon 6 months post transplant!
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 stabalize and stay strong and steady…
Giovanni is home – Dr. Sung-Yun Pai did it again
Giovanni is home! Dr. Sung-Yun Pai did it again. KNOCK ON WOOD. Story via Concord Monitor here.
Prayers for Giovanni
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 unknown. Because each piece of news…
Charlotte & Roy Hagelin – Our heartfelt sympathy
Dear Charlotte and Roy, We want to express our heartfelt sympathy. May the love of family and friends comfort you. Paulina & I wanted you to know that we are grieving with you and thinking of you always. Jack’s battle against the NEMO primary immune deficiency has inspired many and will inspire many more. We…
Prayers for Jack
Please say a prayer for Jack. Jack had his first transplant a year ago. More about Jack’s story here and here. This from Jack’s mom blog last Saturday: He is still having breathing problems and is still on oxygen. This pneumonia is really kicking his butt. The doctors have been giving him doses of Albumin…
Simon still vomiting
This from Simon’s mom: We thank God everyday for the engraftment of 99% and keep praying it holds strong and steady. We had some of Simons vomitting issues come on strong the last two days with vomitting to the point of dry gagging while I hold him over the sink first thing in the morning….