EMILY GRACE Emmie was born in Seoul

Update, posted May 26, 2009 Update June 3, 2009 Update June 5, 2009

Urgent Prayer Request for Emmie - July 15, 2009 Update June 22, 2010

Emmie was born in Seoul, Korea, on November 28, 1999. She was cyanotic at birth, causing doctors to fear a heart defect. Their fears were confirmed with a diagnosis of Tetralogy of Fallot with Pulmonary Atresia and Major Aorta Pulmonary Collateral Arteries. She had her first open heart surgery at the age of 3 months, and her second at 11 months, both in Korea.

Emmie's family was all the way across the world in the U.S. when they found Emmie, but God brought them together because Emmie needed a family and her family needed her! Doctors explained how sick Emmie was, but that only confirmed the fact that she needed to be here. Emmie arrived in America at the age of 14 months. She was very sick and doctors here began planning to help her. She was soon diagnosed with DiGeorge Syndrome, which has 185 known anomalies associated with it, many of which Emmie already clearly has, and is the cause of her severe heart defects.

She endured her next open heart surgery at Children's Hospital of Philadelphia, at the age of 20 months, others at 23 months, 2 years and 2 months, 2 1/2 years, and 2 years and 9 months. She suffered a cardiac arrest and endocarditis 2 weeks later at the age of 2 years 9 1/2 months, and another heart surgery days after that, to repair that damage. During this time, she had a FLAT-LINE EEG! Two months later, just days before her 3rd birthday, Emmie had another surgery hoping to correct what was believed to be severe GI problems. During this surgery she also had a G-tube placement, as she can no longer eat or drink from the neurological damage. The GI surgery proved to be unsuccessful, as the vomiting episodes persisted, and 4 years later, at the age of 7, it was suspected that Emmie had Cyclic Vomiting Syndrome (CVS), which was also later ruled out. Spinal taps, brain MRIs and CT scans, tons of blood work and very strange tests, have all revealed nothing.

Emmie is often hospitalized for IV fluids, as dehydration causes heart failure, and she must be heavily sedated, putting her into a deep sleep to help limit her suffering. The relentless vomiting and wrenching has caused her esophagus to tear. The vomiting is also dangerous for Emmie because she aspirates, causing her lungs to fill up with fluid.

Emmie also has severe pain in her back...x-rays of her spine showed several compression fractures in her spine, and she is now in a body cast. A bone density scan showed that she has severe osteoporosis; extremely thin & weak bones. Her heart rates & blood pressures from the pain are dangerously high, and we pray they will not cause another cardiac arrest to her already sick heart.

Presently, we are awaiting approval from Medicaid for a new body cast to be made by A.I. Dupont Hospital for Children, and we will return to DuPont in September to see the bone specialist. When Emmie is feeling well, she loves to play Barbies, watch Veggie Tales movies, color with her brother and sisters, and beat her mom at Candy-land! She is always smiling, and even says "thank you" to the IV and Phlebotomy teams after they stick her for blood or an IV. She is full of joy, and inspires everyone who has ever met her. Even some who haven't!

For now, Emmie remains in a body cast, which seems to give her a bit of relief from the intense pain, and we await more testing.