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…
Author: Andres Trevino
NEJM article about the history of bone marrow transplants
Fifty thousand transplants last year worldwide. First transplant fifty years ago. Hematopoietic-Cell Transplantation at 50 Frederick R. Appelbaum, M.D. September 12, 2007, marked the 50th anniversary of E. Donnall (Don) Thomas’s initial report of a radical new approach to cancer treatment: radiation and chemotherapy followed by the intravenous…
Play with your food!
At this house we use PLAY WITH YOUR FOOD instead of the opposite. Es every parent (extreme parent I should say) with children that have had parenteral nutrition knows it takes a lot of time for them to learn how to eat again. This is a great tool: Constructive Eating 3-Piece Utensil Set for Toddlers…
A girl and her savior sibling give a human face to a needed debate
Any mother or father who has tended a sick child has felt the powerful desire to comfort and heal. For even the most mundane of illnesses, parents miss work, go to pediatrician appointments and lose sleep. When the diseases are more serious, the efforts become more intense. To what lengths should parents go to help…
UK Kent News: Mum has baby to provide bone marrow donor for son
A mother-of-four has got pregnant again in the hope her new child could be a bone marrow match for her sick son. Donna Zammit’s nine-year-old boy Jamie has a blood disorder called Fanconi anaemia – a rare genetic disease that can cause bone marrow failure, as well as leukaemia. Mrs Zammit, 35, and her husband Thomas, 33,…
Christina & Thomas – Australian Savior Sibling Story
Christina smiles thanks to her little brother Stefanie Balogh October 02, 2007 12:00am HER smile says it all. Nine-year-old Christina Curkowskyj wakes up and embraces every day, along the way teaching her family to do exactly the same Christina, who has the rare and deadly genetic disease Fanconi’s anaemia, was given three months…
Sofia en el columpio
The first ever webinar about NEMO
Dr. Jordan Orange is the first Immunologist worldwide to give a webinar (definition via Wikipedia) to a primary immune deficiency patient group. He’s also a pioneer regarding primary immune deficiency research (he diagnosed my son Andy). His webinar included NEMO pathway descriptions, a map of NEMO mutations, ectodermal dysplasia and GI issues with NEMO. The webinar lasted for 1 hour 15 minutes and…
“Genetics is not destiny” according to this Boston Globe article
The same way a map will never have the exact shapes of the earth… But they help you get from point A to point B. Here is the newspaper article: Of genes and motherhood: Even when our children resemble us, the outcome can be very differentBy Carey Goldberg, Globe Staff | September 24, 2007 I…
Andy playing soccer
Team: Sudbury United Andy will play at a Special Olympics Massachusetts tournament October 21st. at Milton, Ma.