This week, we will meet Lori Burke. Two of her four children have warburg Micro Syndrome, a very rare disease that affects less than 200 people worldwide. they are the oldest known patients in the world. She writes about them and her experiences on her blog, The Heartful Mom.
Episode Segments:
Heaven Sent and Bent: Lori Burke Lori and Kevin don’t need to set up special events to teach their family service. Service is just what they do, every day of their lives, sun up to sun down. Lori was a young mom when her first three children were born. Three children, three , two, one…GO! Katie came along with no problems and was an able bodied two year old when MaryEllen came along. At first MaryEllen’s disabilities did not have a diagnosis. She was medically fragile and they thought it was a fluke. One year latter when Kevin Jr. was born they knew they were dealing with something genetic. Warburg Micro syndrome.