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Insurance struggle for baby with rare disease

2.8 from 13 votes
Sunday, June 01, 2008

"She was the mystery baby," said Courtney Murray, the girl`s mother.

Doctors now know what`s causing Sidney Markie`s life-threatening illness and how to treat it. However, getting the life saving surgery is still out of their reach.

"She`s a very strong-willed girl," said Murray.

Looking into Sidney`s big beautiful eyes, her parents don`t see a sick little girl but each day is a struggle for this little girl. Sidney has a rare genetic disorder called microvillus inclusion disease. It prevents her from absorbing any nutrients or liquids through her small intestines.

"It`s been extremely hard emotionally, physically, financially," said Murray.

Sidney receives all her nutrition directly into her bloodstream. She receives liquid nutrition called TPN through an intravenous feeding pump that she`s hooked up to 20 hours a day. It provides all of her nutrients and fluids.

Even a small amount of food by mouth will put Sidney`s body in distress. The intravenous feeding is only a temporary treatment. The TPN will eventually cause liver failure.

Her only chance for long-term survival is an intestinal transplant and the only place to get it is Miami`s Children`s Hospital.

"There`s no other doctors that have the capability of doing this surgery on her, especially in a baby her size," said Murray.

Sidney`s insured through Minnesota`s medical assistance, which won`t approve an out-of-state surgery. The family is appealing the decision but they don`t have any time to waste.

"With her getting sick, it could happen tomorrow, it could just come on quickly. It`s very, very frustrating," said Sidney`s father Rick Markie.

Sidney`s mother as spent hours on the phone trying to find some solution.

"I`m angry, not angry with my family but just angry at the fact that the system isn`t working for us," said Murray.

However, they haven`t lost hope. They say family and God are helping them get through each day.

"We just continue to fight. I tell everyone around me I won`t let my daughter die," said Murray.

Sidney needs to be evaluated at Miami`s Children`s Hospital before she can get on a transplant list but she can`t get evaluated until her insurance is approved.

The family`s only hope is to find some way to get insurance coverage or somehow raise the money for the surgery.

The family said they`ve been told with the surgery, Sidney has a very good chance of living a normal life.

© MMVII, CBS Broadcasting Inc.

Author: By Maya Nishikawa
Source: WCCO
2.8 from 13 votes
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