Name: Emmie (Emily) Age: 8 years old Date of Birth: November 28th, 1999 Main Diagnosis: DiGeorge Syndrome Other Diagnoses: Multiple Heart Defects, Cyclic Vomiting Syndrome
Emily Grace ("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 another at
11 months, both in Korea. Emmie's new family was all the way across the world in
the U.S. when we found her, but God brought us together because Emmie
needed a family, and, even more so, our 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, 2½ years, and 2 years and 9 months. She suffered a cardiac arrest
and endocarditis 2 weeks later at the age of 2 years 9½ 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, a LADDS procedure, 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. Emmie also battled RSV
at the age of 3, which put her into congestive heart failure, liver, and
kidney failure. Miraculously, she survived this too!
The GI surgery proved to be unsuccessful, as the vomiting episodes
persisted, and 4 years later, at the age of 7, Emmie was diagnosed with
Cyclic Vomiting Syndrome (CVS), which causes sudden, unexplained attacks of
vomiting episodes occurring every 5-10 minutes, day and night, for several
days. Most episodes last an entire week. Emmie becomes exhausted to the
point of a coma-like state. There is no cure for CVS, but Emmie's doctors
and our family are researching treatments and specialists in this rare syndrome.
During a Cyclic Vomiting Syndrome episode, Emmie must be hospitalized
immediately 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 retching has caused her esophagus to
tear. The vomiting is also dangerous for Emmie because she aspirates,
causing her lungs to fill up with fluid.
From October 2007 through January 2008, she remained hospitalized in
Children's Hospital once again, through her own birthday, Thanksgiving,
Christmas, and New Year's Eve. She was very sick, and as time went on, more
symptoms, including hypertension and tachycardia, occurred. Doctors tried
many medications for cyclic vomiting, migraines, and seizures, with no
success at helping Emmie. She was finally discharged on January 1st, as
there was nothing else doctors could do, and everyone felt she would be more
comfortable at home.
During the past few weeks, Emmie's hypertension and tachycardia have
escalated, despite new medications, and she is still nauseous and gagging,
and having terrible headaches. Her Cardiologist ran several more outpatient
tests, all with no answers. He then spent 2 days researching and looking
over her past and recent MRIs and CT scans with Neuro Radiology doctors.
They discovered that she has pin point hemorrhages in her brain, and one
area of her cerebellum is shriveled up and not growing along with the rest
of her brain.
Presently, doctors are still researching and testing, to find the route of
her latest illness, which they think may be a tumor or aneurysm in her brain
stem. The brain stem is very difficult to image because it is encased in
bone, so this is a very difficult medical challenge.
Emmie 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!
Abilities:
See: Yes, but requires glasses. Hear: Yes. Talk: Yes, but her speech is impaired. Walk: Only with assistance. Read: Not yet. Use hands: Yes.
Siblings:
sister Kira, age 19
stepbrother Drew, age 18
stepsister Justine, age 16
sister Elena, age 14 (twin)
sister Erica, age 14 (twin)
brother Christian, age 9
Child's Interests:
When Emmie is feeling well, she loves to pretend with play food, play
Barbies, watch Veggie Tales movies, paint, color with her brother and
sisters, and beat her mom at Candy Land! She also loves Hannah Montana and
High School Musical. But her absolute favorite is Hello Kitty and the color
PINK!
Sibling's Interests:
Elena likes cooking, baking, computers, jewelry making, Bible study and
animals.
Erica likes soccer, baking, computers, Bible study and jewelry making.
Christian likes football, baseball, reading and math.
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