Torri's Marfan Syndrome

Torri was diagnose with Ectopia Lentis at the age of 4 and at 6 with Sensory deprivation exptropia of the right eye. She has had 2 surgeries on both of her eyes. She was born with Cataracs in both eyes. The Texas Children Hospital is now doing genetic testing to see if she has Marfan Syndrome. Marfan syndrome is a genetic disorder that affects the body’s connective tissue. Connective tissue holds all the body’s cells, organs and tissue together. It also plays an important role in helping the body grow and develop properly. Because connective tissue is found throughout the body, Marfan syndrome can affect many different parts of the body, as well. Features of the disorder are most often found in the heart, blood vessels, bones, joints, and eyes. Some Marfan features – for example, aortic enlargement (expansion of the main blood vessel that carries blood away from the heart to the rest of the body) – can be life-threatening. So because of this she has to have a Echocardiogram done before she can have the surgery. To make sure her heart is strong enought for the surgery. My insurance is only covering 70% of some the testing and surgeries needed to correct her condition. Some test are not covered at all. I will have to pay out of pocket for these.  She goes in to have the Echocardiogram done first if all comes back ok she will have the surgery on April 20th at The Texas Children Hospital in the Medicial Center.  I am a single parent of a beautiful and smart little girl. She is the only thing in my life that is keeping me afloat. I ask for anything that you can do to help us. Thank you so much for taking the time to read our story.