The Thirteen-Year-Old Young Girl, Diagnosed with Cockayne Syndrome, Living Inside the Body of a Ninety-One Year Old

The life experiences of a child, with a rare illness, from the Front Page Sections, translated…

Celebrating a thirteenth birthday is not at all that difficult for normal children, but for Wen-Yu Lu who had been diagnosed with Cockayne Syndrome, it’s considered, a miracle.

April 26th would be Lu’s thirteenth birthday, but, it’s equivalent to the birthday of a ninety-one year-old individual.  The Angels Development Center yesterday held a birthday party for her and other children who were born in the month of April who are physically handicapped.  Her mother, Chen said, that the average age of children diagnosed with Cockayne is thirteen, and, she’d tried hard not to cry, as she talked about facing the imminent death of her own child, and tried, to fulfill the time she has left on this earth.

After Lu was born, all seemed normal, at one and a half years old, she was developmentally delayed, her parents realized that something wasn’t quite right, and, at age two, they’d taken her into the Angels Early Intervention Center, at age four, the diagnosis of Cockayne was confirmed, it’s also called Aging-Fast Disease, those diagnosed would age seven times faster than the normal individuals.

The doctor diagnosed, that Lu’s intelligence is around age one, her physical growth was stunted, her height is only 2’5, and weighed at 19.8 pounds, and she’d lost her sense of hearing and sight too.

Chen said, she can only communicate with her daughter by touching now, and, Lu can only use the single-word vocabularies that she’d learned from age one, to express her needs, when she’d wanted a drink of water, she could only say, “Water”, the word, “mother” is the most complete of her expression of speech.

Chen said, she could see and hear her daughter, trying to walk using her walker, to skip school, “as I’d just dropped her off in class, she’d snuck out, and gone into the elevator, went downstairs.”

And now, Lu can no longer see, or hear, lacked that sense of security, and loved staying close to her mom.  Chen said, she didn’t know when her daughter will leave her side, she’d used to taken her out to see the scenes, and now, all she can do, is to cherish every moment they’re sharing together.

So, this, is another illness of the childhood years, and, imagine how hard it must be, for this thirteen year-old teen who should be active, running around and about, to be STUCK, immobilized inside an ailing body, can you imagine, how HARD it could be, for this person?

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Filed under Awareness, Children with Rare Conditions & Special Needs, Coping Mechanisms, Life, Loss, On Death & Dying

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