Help Raise Funds for this Girl with Marfan Syndrome to Receive Open-Heart Surgery in London

Eight years: that’s how long it has been since Moxie Garrison was diagnosed with Marfan syndrome. Now nine years old, the spunky and resilient third grader approaches every challenge head-on. Her health struggles have not always been easy. Retinal detachment in her right eye caused vision loss; Moxie also deals with heart issues. At two years old, doctors found a large aortic aneurysm that they have been monitoring since. Unfortunately, the aneurysm has grown too large and the risk of rupture continues to grow. Moxie must undergo open-heart surgery to address the aneurysm and potentially save her life. 

KY3 reports that the family, who hails from Missouri, has found a surgeon in London who is willing to help. However, the funds for the surgery must be paid in advance. The community has rallied behind the Garrisons to help. In honor of Moxie’s desire to become a paleontologist, teachers at her school dressed up as dinosaurs to raise money. Further, a GoFundMe for Moxie has already raised over $70K for treatment. If you would like to contribute, you may donate here.

The Basics of Marfan Syndrome

Marfan syndrome is a multisystemic inherited disorder that affects connective tissue throughout the body. Most often, Marfan syndrome affects the heart, blood vessels, skeleton, and eyes. This condition results from a genetic mutation that affects the creation of fibrillin-1, a protein. The mutation causes an overproduction of transforming growth factor beta (TGF-β), which leads to the connective tissue issues. Symptoms and characteristics typically manifest in infancy, though some may appear in childhood or adolescence. Potential symptoms may include:

  • A tall and slender build with disproportionately long arms, legs, and fingers
  • Heart murmurs
  • Scoliosis (abnormal spinal curvature)
  • Flat feet
  • A high, arched palate and crowded teeth
  • Protruding or dipping breastbone
  • Nearsightedness 
  • Aortic aneurysm or dissection
  • Asthma
  • Hypotonia (low muscle tone) 
  • Lens dislocation
  • Early-onset glaucoma 

Treatment options include back braces, glasses or contact lenses, drugs to lower blood pressure, and surgery.

Jessica Lynn

Jessica Lynn

Jessica Lynn has an educational background in writing and marketing. She firmly believes in the power of writing in amplifying voices, and looks forward to doing so for the rare disease community.

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