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…
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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,…
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.
The Stool Scale
Before Andy’s transplant and during transplant there was a direct relationship between happiness and the appearance of faeces. Strange.. but that’s the way it is. Extreme parenthood… I remember the day when I changed Andy 34 times in 24 hours. one diaper every 42 minutes. According to the chart below If he had a Type 7 it meant that we had to run to…
PGD for Alzheimer’s
IVF couple screened to avoid Alzheimer’s risk By Rebecca Smith, Medical Editor A couple who fear their child could inherit a rare form of Alzheimer’s are to undergo embryo screening to eliminate the risk. The Human Fertilisation and Embryology Authority has granted a licence to a fertility clinic to carry out IVF…
The Book
Since I decided to write a book about our story and while I find literary depth and context, I’ve been trying to learn about book publishers. I find this story amazing: Scholastic Pockets $240 Million from PotterBy Jim Milliot — Publishers Weekly, 9/20/2007 7:21:00 AM Harry Potter and the Deathly Hallows came through…
Testicle stem cells? via BBC
A man’s testicles might be a source of stem cells to help him fight serious diseases, US scientists have shown. They extracted early-stage sperm cells from mice, then turned them into cells capable of becoming different tissues. Writing in Nature, the Weill Cornell Medical College team said their work might lead to treatments for…