Elisabeth L.'s Page

(This is Elisabeth's story told by her parents)
Elisabeth was diagnosed with severe scoliosis at the the age of 3, we took her to an orthopedic specialist in 2006. They first fitted her for a brace and was thought to have Marfan's Syndrome. We were given a brochure on Marfan's. The brochure explained how it effected the eyes, heart, lungs, skeletal system, and mainly the entire body. We didn't know what to think and what lied ahead. Marfan's syndrome is a genetic connective tissue disorder. With neither parent having this gene was very rare for the child to inherit this gene. Six month's later her scoliosis became so severe that her orthopedic said her spine was starting to crush one of her lungs and if she didn't have surgery she would not live past the age of 5. We prepared for ourselves for her first spinal surgery in July of 2007. We waited anxiously for 12 hours in the waiting room at our children's hospital to hear how everything went. At the time her body excepted the two titanium rods and sixteen screws in her spine. Remembering her first tiny steps after surgery still brings tears to our eyes. But things started to go downhill months after the rods were in place, the upper part of the rods started to pull away from her spine. We went back in for another surgery 3 months later, the orthopedic surgeon tried repositioning the rods and put in a strong surgical tape and removed a few of the screws to try and hold down the rods. About a month later we noticed a boil come up at the top of her spine, we were told she had developed a staph infection, they took her back to the operating room to clean out the infection and was sent home a week later with a picc line for IV antibiotics for about 3 months. She has been through several revisions for the upper spinal rods. On December 21, 2008 one of the spinal rods came through the skin during a Christmas play she was attending at church, her part in the play was an angel and that she is. Even with this rod poking out of her back, she finished her part in the play. We ended up back in the hospital for another surgery and this time the doctor removed the upper rods to let the skin heal where it had been opened up several times. She has now had 8 spinal surgeries, three staph infections, diagnosed with an enlarged aorta, restricted/obstructive lung disease due to the upper rods being out. On September 17, 2010 she was admitted once again, except this time she was admitted for slow heart rate, low blood pressure, lethargy, and malnourishment all due to a medication she was put on back in February this year. On September 20th of 2010 she was back in the operating room for a GI scope test and a feeding tube was put in place to help with her malnourishment. Her dad returned home for a few days for work while they started her on feeds. Elisabeth's spirits were a little down until my husband said when he returned home that there was a package left on our front door step that said we were chosen for this years Kidd's kids trip to Walt Disney World. We could not have had any better news at the right time, Elisabeth was so excited. So we would like to thank God and Kidd's kids for this opportunity of changing her life during a time like this. She no longer has the feeding tube in and has moved on to her feeds by mouth and each day she seems to be getting better. I will say one thing, none of this has ever broken her good spirit, her attitude through all of this has been strong and no matter how hard things get she is always looking at the brighter side and finds time to smile, laugh, and continue to keep a good heart. Elisabeth is our HERO!