|
|
E'trece's Story
written by mom Sherry |
|
|
E'trece was born on December 15th, 1992 in
Portland, Oregon. The delivery was completely normal. She progressed
normally and was a happy, intelligent little girl.
By the time she was about four years old we noticed that she was a little
uncoordinated. When she danced or ran, she would fall easier than what we
would have expected. She began Kindergarten at the age of 5. At the end of
that school year, her teacher called us and suggested that we visit a child
development specialist because she felt E'trece wasn't progressing in her
motor skills like the other children. By the time our primary doctor got the
insurance approval, we had started to see some obvious signs that something
wasn't right. We noticed her falling more frequently and she would often
drop her spoon during dinner for no obvious reason. She was seen by three
neurologists before being diagnosed with Neimann Pick Disease type C in
September 2000.
NPD type C is a rare genetic disorder in which the body stops mobilizing
cholesterol in the nerve cells in the brain where it accumulates and causes
malfunction of these cells. The major symptoms of the disease are
unsteadiness of gait (ataxia), postering of the limbs (dystonia), abnormal
eye movement (vertical supranuclear gaze palsy), difficulty with mental
functioning (dementia), seizures, slurred or irregular speech, and
difficulty chewing and swallowing. Typically a child with NPD type C
continues to physically and mentally deteriorate until death, which usually
occurs by the teenage years. There is currently no known treatment or cure
for the disease.
E'trece continued to deteriorate over the years. Her speech was very
difficult to understand and she was quite dependent on her wheelchair.
When E'trece first began having problems, she frequently asked if she was
going to die. She would also say that if she did, that it was okay because
all children go to Heaven. No matter how many times we told her that she
shouldn't worry about dying or that we didn't even know if she was sick, she
would still regularly make comments about how fun Heaven would be, that she
could play all the time, and she would not have to listen to her mom
anymore.. LOL!
Throughout the years, E'trece continued to show her wonderful and strong
spirit. She knew that she wouldn't live very long. She didn't talk about it
much, but she still carried on, as courageous as ever. As her body continued
to deteriorate, her spirit and faith never wavered.
In her last months, she was still loving and smiley as ever despite her lack
of ability to walk or talk.
Back in February 2006, she had a hard, but fast bout with pneumonia. She was
able to fight it off on her own. In the first week of July, she aspirated
and pneumonia set in again. This time, her body just wasn't strong enough to
fight anymore. She was able to say her goodbyes. She jokingly mouthed
"Peace, Homeboy" to her dad, and mom got the last hug. On July 8th, 2006,
after a six day battle, she passed away peacefully, family at her side.
We are all doing well, though this has obviously resulted in major changes
to our family. It's been a long seven years of suffering, so we are happy to
know she is hangin' with the angels now. In fact, I'yonna clapped and said
"yeah" when Yonnie told her that E'trece had gone to live with Jesus.
Please continue to keep us in your prayers as we transition into life
without our precious little girl.