SISTER, SAVIOR By Kate Kruschwitz Children’s Immunology chief Raif Geha, MD, and gastroenterologist Samuel Nurko, MD, MPH, struggled to bring Andy’s infections under control. Meanwhile, Jordan Orange, MD, PhD, an immuno-genetics specialist, searched for clues to Andy’s condition. Orange was conducting research on the immune system’s master switch, the gene NF-kB Essential Modulator, or NEMO….
Stem Cell Transplant
Transplant boy is out of bubble via BBC News
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….
Skin cells > IPS cells > correct mutation > blood stem cells > transplant > cure
Researchers from the Whitehead Institute for Biomedical Research in Cambridge, Mass. and Kyoto University in Japan used an innovative new method to reprogram adult cells to an “embryonic-stem-cell-like” state, and successfully cured mice with sickle-cell anemia. iPs = induced pluripotent stem Press Release
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…
Stem cell hope for immune disease via BBC News
Common immune system disorders, such as multiple sclerosis and arthritis, could one day be treatable with bone marrow transplants, research suggests. Currently, the procedure is reserved for life-threatening disorders because chemotherapy or radiotherapy is needed before a transplant can be done. But a protein may do the same job without dangerous side-effects, a…
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…
Happy Second Birthday Andy
And what a way to celebrate with the Red Sox win yesterday! Three years ago today Andy received Sofia’s stem cells. Here are some pictures from that day. Sofia visits Andy prior to her procedure: Sofia preop: Andy before receiving Sofia’s stem cells: Sofia after the procedure: Michelle Lanni, bag of stem…
1095 days ago
This is what I wrote 1095 days ago: 21:35 SLEEP21:43 DIAPER CHANGE22:04 VITAL SIGNS23:15 MED – Senna23:33 PUSHING – DIAPER CHANGE23:57 PUSHING – NAUSEA MILD00:23 SCREAMING – PUSHING – NAUSEA00:36 PUSHING00:54 PUSHING – DIAPER – NAUSEA01:16 PUSHING – DIAPER – NAUSEA01:26 PUSHING01:32 PUSHING01:37 PUSHING – TALKING “ME QUIERO DORMIR”01:55 NURSE IN ROOM CHECKS PUMPS01:57…
1095 days ago
This is what I wrote 1095 days ago. Hanging in there. We’re on day -3. Three more days for DAY ZERO. His ANC today was 2,500, a little higher than yesterday. His White Blood Cell Count was 4.35. Andy is incredibly patient and thanks to his patience he will win the battle against primary immune…