My daughter, Mikkaylah Lynn, is four years old, but looks no older than two. She is very tiny for her age, and she looks like a wizened little old woman. At the age of four, she has very little hair on her head, no eyebrows, no eyelashes, and her face is wrinkled.
She also has hardening of the arteries, and has already had three strokes. In addition, she has arthritis that causes her pain upon walking, heart disease, and the beginnings of osteoperosis in her spine.
Mikkaylah was born seemingly healthy, but at about the age of one, she started showing symptoms of an odd disorder that had doctors puzzled. She was slow to grow, gain weight, and at first they couldn't figure out what was going on with her.
Well, we took her to a doctor who specialized in rare disorders; it was he who diagnosed her as having progeria, or premature aging.
They don't think Mikkaylah will live to be older than six, seven at the most. Her disease is progressive, and unfortunately, it is fatal. She will die of heart or respiratory failure, or even a stroke or any number of disorders that usually strike older people.
At the news, we were devastated. We were not prepared for our daughter to be terminally ill; however, we are slowly adjusting to her many needs.
Like any older person, Mikkaylah has to be monitored every few months, to see if her blood pressure is up, or if her heart/lungs are acting up. They also have to check her cholesterol, her bone density, or her arthritis, osteoperosis, to see how they are progressing.
At these appointments, she is a favorite of the doctors and nurses who tend to her; however during the more invasive or involoved tests they usually put her to sleep because she would otherwise cry her head off.
So far, her health's been holding its own, but we are waiting for that time, where the other shoe will drop. We are so scared she is going to have a stroke or a heart attack or even breathing trouble; however, so far that hasn't been the case. The most serious problem she's had lately is her arthritis acting up again.
Whenever her arthritis acts up, she has to have hot baths or therapy to help keep her joints mobile. She also takes medication for cholesterol, blood pressure, her heart, lungs, arthritis, any number of things. She takes close to twenty different kinds of medication.
It's a good thing we have insurance, or else we wouldn't be able to afford to keep our daughter healthy. Any day that she remains healthy (or out of the hospital) is a blessing from God, and we want to make what's left of her life happy and unforgettable.
When people see our daughter, they aer always sad when we tell them her story, but at the same time they are amazed at her courage, her will to live despite overwhelming odds. They soon feel comfortable around her whenever they hear her childish giggles or see how smart she is.
Although she may look different than most children, our Mikkaylah acts like any other four-year-old. She loves the color pink, playing with big colorful balloons or balls, dolls, or any number of educational toys (particularly those that involve animals or noises), and loves to draw, color. She is a very active child, and at times she wears us plumb out with her energy!
I will write more about Mikkaylah at a later date. I will also tell you more about progeria, what it is, and why we must try to find a cure or to help those stricken with this rare, little-understood, life-threatening disease.
Until later, this is Madeleine Nelson, Mikkaylah's mommy, signing off! Take care and God bless!
