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.

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