|Hi! My name is Alexandra. I was born in 1997, and I have MHE. I like having MHE because I like having bumpy bones and I donít like heparin sulfate. I have bumps on my ribs, legs, ankles, arm, clavicle and (I think) I have two on my back. My favorite bump is on my very right ankle. My second favorite one is on my clavicle.
I have an older sister and a younger brother and a Mom and Dad. Iím the only person in my family who has MHE. My favorite thing in the world is flowers. My very favorite flowers are sunflowers, lilies, daffodils, climbing roses and tulips. I only like to wear clothes with flowers on them and I know how to draw flowers very well.
I also have KUD (ketone utilization disorder) and I like having it because I donít want to eat too much protein and I donít have to. I am wondering if anyone else has both those disorders.
Iíve never had surgery and my bumps just hurt if I push on them. I like reading the stories from other kids!
|You can email Alexandra at
email@example.com. Type "For Alexandra" in the subject line