"Insurance Struggle For Baby With Rare Disease"
A Shakopee family is facing a heartbreaking struggle with a 3-month-old little girl who has a rare disease.
"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.
The parents say they've been told medical assistance may not pay for the surgery. A spokesperson with the Minnesota Department of Human Services says state insurance does cover out of state procedures if deemed effective and necessary and the procedure is not available within the state.
The spokesperson could not comment on Sidney's case specifically. Sidney's parents are still waiting to hear if the surgery will be covered and they say their daughter has no time to lose.
"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.
Reporting
Maya Nishikawa (WCCO)