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Mom held her ‘bubble girl,’ wondering if she would die

NASHVILLE, Tenn. (BP)–A mother’s story about her “bubble girl” is among the resources about Severe Combined Immune Deficiency posted on the Internet by various parents whose children are battling, or have died from, SCID or other immune deficiency diseases.

Sara Hagemeyer writes of her daughter Alexis’ struggle:

“Approximately 5 years ago my 4-month-old little girl (was) diagnosed with Severe Combined Immunodeficiency.

“Just to let you know a little bit about her background, she was a very ill little girl. She was airlifted by helicopter back home because we were on vacation. Ever have your child taken from you and airlifted to a different city in which you could not accompany her?

“After a week of hospitalization, spinal taps, blood taken around the clock and finally removed from her head, she was diagnosed with Severe Combined Immune Deficiency or better know as ‘Bubble Boy’ disease.

“In her straight three months of hospitalization in an isolated unit, she endured something any human being should not endure. She had a lung removed, her ribs broken, many chest tubes draining her lungs, was put on a ventilator with tubes coming out of every hole in her body and tied to a bed so she would not remove those tubes.

“Alexis underwent two chemotherapies that make your skin peel and make you vomit blood. She was constantly on oxygen for 3 months and did not eat during this duration. She was fed intravenously. She had to starve to learn to eat again.

“I could keep going but I am sure you get the picture. After Alexis spent a year in isolation, she came off all medications and our story has a happy ending. Believe me when I tell you most SCID stories do not end as happily as ours.

“When my husband and I would try to explain to anyone about the fatal disease our daughter was born to, we would tell them the ‘Bubble Boy’ disease, as in the (Disney ‘Bubble Boy’) movie.

“You (Disney) are taking that away from us. You are turning our misfortunes into a joke and I for one do not appreciate it. Alexis was too young to remember all the hell she went through, but my husband and I as well as her grandparents remember every detail — every time I held her in my arms wondering if this would be the day she would die.”

The mother’s story and photos of Alexis can be seen on the Internet at http://www.n2online.com/about.html. An update of Alexis’ life is at http://www.n2online.com/alexis2.html.
(BP) photos posted in the BP Photo Library at http://www.bpnews.net. Photo titles: ‘BUBBLE GIRL’ and SARA HAGEMEYER & DAUGHTER ALEXIS.

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