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KUTV.com | Stories - Young Mom Diagnosed with Rare Genetic Disorder
Wednesday, June 25 2014, 12:07 PM MDT
Young Mom Diagnosed with Rare Genetic Disorder
(KUTV) Michael and Enedina Stanger's love story started shortly after she graduated high school. The two eventually got married and they had 2 kids. After the birth of their second daughter, Enedina's health started to deteriorate. "There were days where I could not get out of bed," said Enedina. "And Michael had to take off work because I was literally stuck and I could not move my body."

There were times that Enedina's symptoms were so severe that she had to be rushed to the emergency room. "There was one time in particular where I thought she was dying," said Michael. "Because she couldn't breathe."

Enedina was initially diagnosed with everything from post-postpartum depression to stress. In just six months, the 25-year-old went from chasing after her two daughters to barely being able to walk. She saw a neurologist at the University of Utah, Dr. Zinkhan, who diagnosed Enedina with Ehlers-Danlos Syndrome, or EDS. Ehlers-Danlos Syndrome is an inherited connective tissue disorder. "Basically, it is the glue that holds your body and it doesn't work," said Enedina. "The collagen is defective."

The collagen helps contribute to the physical strength to bones and joints. Enedina is prone to dislocations and muscle spasms. Her husband told us that Enedina dislocated her shoulder while trying to pick up her oldest daughter. Since her bones and joints are weak, Enedina is now in a wheelchair. "I can do some walking but my joints are so loose that will just pop out."

The family has learned to adjust to Enedina's challenges. Michael has become the primary caretaker for his wife and their two children. The family has also received support from their community. Michael told us a neighbor donated a wheelchair ramp so that Enedina can get in and out of the house easily in her wheelchair.

The family is hoping to win a brand new wheelchair van. Enedina entered her husband in to a contest. As part of the application, Enedina shared their story. She writes, "Michael is my hero because he never gives up hope. He's never doubted me. We've mourned the life we wanted, trying to find the positive in the everyday. All I can do is try to ease stress, lift some weight off him."

If you want to vote for the family, visit: http://www.mobilityawarenessmonth.com/entrant/enedina-stanger-south-weber-ut/

(Copyright 2014 Sinclair Broadcast Group)Young Mom Diagnosed with Rare Genetic Disorder

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