Why I’m doing Jeans for Genes’ Bake it Blue

I’ve signed up to do Bake it Blue. This raises money for Children’s Medical Research Institute and helps save more kids’ lives. Can you help by sharing this message with the people you know and asking them to donate too?

Here's just one story explaining why this cause is so important:

Henry was a healthy, active child, until one day out of the blue, “He became lethargic, pale, appeared very puffy and was vomiting, and we knew something was very wrong,” said his Mother, Melissa.

Henry was flown in an induced coma to RCH where he has genetic testing done which discovered an ultra rare life threatening syndrome called aHUS. 

Atypical hemolytic uremic syndrome (aHUS) is an extremely rare disease characterized by low levels of circulating red blood cells due to their destruction (hemolytic anemia), low platelet count (thrombocytopenia) due to their consumption and inability of the kidneys to process waste products from the blood and excrete them into the urine (acute kidney failure), a condition known as uremia. It is a distinctly different illness from the more common disorder known as typical hemolytic uremic syndrome, which is caused by E.coli-producing Shiga toxins (Stx HUS) and is generally foodborne. Most cases of aHUS are genetic, although some may be acquired due to autoantibodies or occur for unknown reasons (idiopathic). aHUS may become chronic, and affected individuals may experience repeated episodes of the disorder. Unlike individuals with typical HUS, who usually recover from the life-threatening initial episode and usually respond well to supportive treatment, individuals with aHUS are much more likely to develop chronic serious complications such as severe high blood pressure (hypertension) and kidney (renal) failure. The signs and symptoms of aHUS result from the formation of tiny blood clots (microthrombi) in various small blood vessels of the body. These clots reduce or prevent proper blood flow to various organs of the body, especially the kidneys. aHUS is a complex disorder and multiple factors, including certain genetic, environmental and immunologic factors, all play a role in its development.

So, the research you and I support today will directly support Henry and children in similar situations.

There’s lots of work to do, but there is also lots of hope.

Join me. Share this message. Donate. Thank You!