A friend and colleague of mine has a two and half year-old daughter, Olivia, who has a rare disease called Wolf Hirschhorn Syndrome (WHS). It affects her physically and developmentally. She has an atrial septic defect that will need heart surgery, she has seizures, and she cannot walk or talk yet. Wolf Hirschhorn Syndrome, a deletion on the 4th chromosome, affects 1 in 50,000 kids in a high degree of variability. The thing is, there is science and technology out there that can fix some of her ailments. There are ways to replace the genes that are missing not just for kids with WHS but for a wide variety of chromosomal abnormalities.
She has very recently started a nonprofit, LIV4TheCure, of which I am a board member. She started it to raise awareness, help families, and fund research for kids with Wolf Hirschhorn Syndrome. I encourage you to donate