Transplant boy is out of bubble A six-year-old boy is able to leave hospital seven weeks after receiving a bone marrow transplant from a donor in the United States. Rhys Harris of Newbridge, Caerphilly county, is one of only about 40 people in the world with Nemo, a genetic disease crippling his immune system….
Family & Friends
Charla – Andy’s nurse
Charla took care of Andy during his hospital stays back in 2001, she moved to Texas with her family in 2003 (Vince husband and now has 2 kids) . We saw Charla yesterday she was visiting Boston for a medical conference. Andy didn’t remember Charla (he was 2 years old). This picture from circa Oct….
Rhys going home! Day 48
This from Kevin, Rhys Dad: Tomorrow,,,, Rhys comes home…… I find it weird to even write? After what is considered a short period for a complex procedure? 48 days plus 8 days chemo… I left him tonight and said good bye to some of the Nurses, I was actually a bit emotional. After hating going…
Conner’s Home!
Emotional contact just what doctor ordered By DOROTHY SCHNEIDERdschneider@journalandcourier.com There were few hugs at Conner Smith’s homecoming celebration Monday night, but the joy and excitement in the air was tangible. Thirteen-year-old Conner returned to his Lafayette home for the first time since July, when he went to Cincinnati for prepare for a bone marrow…
Conner’s Mom AHA moment
Conner received stem cells 87 days ago from an unrelated young woman who turned out to be a 7/8 match. It was his only chance to cure his NEMO primary immune deficiency. I took the text below from his Mom’s blog at cure4conner.org where she describes the “AHA moment” regarding transplants. What she describes is true not only…
IDF Newsletter – What is NEMO?
What is NEMO?By Jordan Orange, MD, PhD Mutation of the gene called NEMO can be a serious cause of primary immunodefi ciency. NEMO stands for the “nuclear factor of kappa light polypeptide gene enhancer in B cells essential modulator.” It is more commonly called the “NF- B essential modulator”, or just “NEMO.” Although the…
IDF Newsletter – Who is Jack
WHO IS JACK? By Roy and Charlotte Hagelin At the 2007 IDF National Conference, when Carol Ann Demaret and Dr. Jordan Orange dedicated their comments to the memory of “Jack” the question on many minds was “Who is Jack?” We are Roy and Charlotte Hagelin from Fairfi eld, New Jersey, and we would like to…
Conner needs platelets and the hospital doesn’t have any to give.
Conner’s Mom: Conner needs platelets this morning and the hospital doesn’t have any to give. We are hoping that they will have some by this afternoon. If you are able, no matter where you live, no matter what your blood type, please consider contacting the Red Cross in your area to find out where you…
Prayers for Simon
Simon’s Mom asks for prayers. It is with a heavy heart that I write this and ask that everyone get down on your knees tonight and pray for Simon. After a grueling day of phone and e mail communications I just found out that our doctors are afraid that all of what Simon is…
Happy Birthday Jack
Jack Hagelin September 4, 2002 – March 27, 2007 This from Charlotte, Jack’s Mom: We have now realized that we no longer want to mourn Jack’s life but really want to celebrate it. So here is the plan, tomorrow is Jack’s 5th birthday and we are asking you to celebrate with us by wearing blue…