Ellie’s Story
Ellie
came into this world, to meet her mom, daddy and big brother Matt, on January
4, 2004. Of course this was a month ahead of schedule...Ellie has always
had a knack for doing things her own way! As a baby she had two moods,
wonderfully happy when she got what she wanted or royally mad whenever she
didn’t. As a crawler and then walker, Ellie was an absolute
TORNADO. She was everywhere and into everything...such personality in a
tiny package! Of course she followed her best friend and big brother
around everywhere, and her favorite words were, “That’s MINE!” Matt
usually gave her whatever she wanted. Little Miss Firecracker could be
very persuasive!
In
December of 2005, when Ellie was 23 months old, she contracted an illness
called HUS. Hemolytic-uremic syndrome is a disorder that usually occurs
when an infection in the digestive system produces toxic substances that
destroy red blood cells, causing kidney injury. Ellie had involvement of
every major body system and spent weeks on life support and dialysis, as her
kidneys completely shut down. She also had a major stroke which resulted
in brain damage to the basal ganglia, the area of the brain that controls all
forms of movement, from the most minute muscle function to walking and talking.
She had multiple surgeries and spent a total of 2 months at Breckenridge
Children’s Hospital in Austin .
However, through all that, Ellie’s spunky, firecracker, tornado of a
personality served her well and helped save her precious life. She fought
through the worst illness that some of her doctors had ever seen. With
time and lots of prayer, her body began to heal, and her kidneys began to
function on their own again. The next 2 months were spent at Our
Children’s House in Dallas ,
which is a rehabilitation hospital where we were introduced to physical,
occupational, and speech therapy and learned about the other challenges Ellie
would face. After going through so much, her journey to recovery began
the day we finally brought her home in March 2006.
Medically,
Ellie has severe cerebral palsey with dystonia. This is a movement
disorder causing involuntary contractions of her muscles, effecting all of her
physical movement. Ellie needs a wheelchair as she cannot sit or stand
unassisted. She cannot eat by mouth, dress or bathe herself, or
communicate effectively verbally. She also lost vision in her right
eye. On paper she is a healthy, happy mess, but as a person she is
perfect.
Ellie
meets each new day with a smile. She lights up when singing, dancing,
playing with her brother and many friends, and at school. Still full of
that same tornado-like spirit, Ellie faces her challenges with lots of hard
work and determination. She attends hours of private therapy every week,
along with being an exceptional student in school. Ellie has an excellent
sense of humor and is quite smart. She is fully integrated into a general
education classroom (3rd grade this year) at school, and academically her
skills are right on grade level. Last month, Ellie attended her first
week-long overnight camp and loved every minute of every day. She swam,
danced in a talent show, sang at campfires, did arts and crafts, met new
friends, and even climbed a rock wall! Almost
7 years later, Ellie’s recovery could be compared to that of a marathon, marked
by slow and steady progress toward the finish. Her doctors have told us
that “as long as Ellie continues making progress, she will continue making
progress”. And now, this little ray of sunshine wants to run a marathon,
and of course she turned on her unique persuasive Ellie-charm and enlisted two
men willing to help her achieve this goal. So we are going to do
everything we can to make this happen for her...our tough, little tornado who
has taught us so much about life and love. Go Ellie!