Baby Michelle

As many of you know Baby Michelle has been hospitalized since November 4th for an enlarged liver, blood infection and hypoglycemia (low blood sugar) she was airlifted to Children’s Mercy Hospital KC (6hours away from home). After numerous testing her results have finally come back with a diagnoses that finally answers our questions. But as any parent we heard news that we knew would change how we lived, to better raise Michelle. Michelle has been diagnosed with a rare disease called Glycogen storage disease 1B (1 in 100,000 babies are born each year in the world with GSD type disease)

(GSD1B) is an inherited condition in which the body is unable to break down a complex sugar called glycogen. As a result, glycogen accumulates in cells throughout the body. In GSD1B, specifically, glycogen and fats build up within the liver and kidneys which can cause these organs to be enlarged and not function properly. Signs and symptoms of the condition generally develop at age 3 to 4 months and may include hypoglycemia, seizures, lactic acidosis, hyperuricemia (high levels of a waste product called uric acid in the body), and hyperlipidemia. Affected people may also have short stature; thin arms and legs; Excessive bleeding (blood clot disorder) a protruding abdomen; neutropenia (which may lead to frequent infections); inflammatory bowel disease and oral health problems. GSD1B is caused by changes (mutations) in the SLC37A4 gene and is inherited in an autosomal recessive manner.)

With that being said her Standard of care will be significantly more than a “normal baby” . For the first year we are required to do weekly in person follow ups to Children’s Mercy Hospital for growth management, food in take and liver precaution care. After she completes a year it will reduce to every other week and so on until early adult hood. In order to keep her sugars stable for longer periods of time she is scheduled for surgery early next week to put in a G-Tube (feeding tube) in her belly which she will have for the rest of her life for nightly continues feedings to avoid random sugar drops , seizures and brain damage. Unfortunately, as both parents would love to spend every second with baby Michelle her father has a 6 hour drive every week , extended hospital stays and multiple specialist is something that would take a toll on anyone. Cesar Fierro and Audrey have had to make the decision to relocate to take away some of that commute time and to be minutes away from better health care as a precaution for Michelle. For all those friends and family we would like to raise some money for this family. And ask for everyone’s prayers so God protects this family and keeps them strong and so they never lose faith. #MichellesJourney