Alyssa is a brave, sweet girl. At three years old she was referred to see a geneticist due to missing teeth and very fine hair. At the children’s hospital, the geneticist discovered a heart murmur and sent her for an emergency cardiac consult, after which Alyssa was diagnosed with major heart issues. Alyssa and her family moved to Texas about six years ago to be closer to her surgeon. Although this made things a little simpler, Alyssa’s treatment plan is not straightforward because her combination of heart defects is extremely rare.

In addition to the heart defects, Alyssa is diagnosed with a genetic condition called Ectodermal Dysplasia, autism, and ADHD. Her heart defects cause excessive blood flow to her lungs that keeps her in stage one heart failure. She is easily tired and moves slower than other kids her age, which is a struggle that makes her feel different. As a result of her genetic condition, Alyssa’s body has difficulty producing collagen, which causes low muscle tone and missing teeth.

Alyssa is creative, compassionate, and an inspiration to everyone that meets and gets to know her. She is often motivated to get through tough appointments by rewards or prizes. Alyssa likes making jewelry for people, painting, and playing video games. She LOVES slime and all types of fidget toys, and someday would like to open a fidget toy store for kids like her.