Girl, Unbowed

Born with a rare form of rickets, 45-year-old Heather Crosby’s childhood was shattered by a series of excruciating—and unsuccessful— surgeries. But after she met Romana Kryzanowska, everything changed.

- Beth Johnson

I GREW UP IN DUXBURY, MA, ON THE SHORE SOUTH OF BOSTON. I was hesitant to walk as a child; I preferred to sit in my little red wagon and point to things. When I was two, my parents realized something was wrong and brought me to Boston Children's Hospital, where I was diagnosed with hypophosphatemic rickets. It is a very rare form of the disease that causes the kidneys to reject vitamin D and phosphorus. It caused my bones to be porous and weak.

CHILDHOOD AGONY

The treatments that followed were brutal. When I was seven, I was hospitalized so they could put a nasogastric tube through my nose, down my throat and into my stomach and for 24 hours, pump massive doses of vitamin D and phosphorus into me. I vomited and had diarrhea the entire time. The next day, they did it again; this time, I was so traumatized, they had to tie me to the table. And after all of that, it didn’t help at all.

LIMITED, BUT ATHLETIC

As I grew, all the bones in my body were misshapen, especially my legs, which were severely bowed. Amazingly, I loved being active. We had a tire swing with big knots, and I'd climb all the way to the top of the tree. I loved playing on the jungle gym and riding my bike. But any impact on my bones was painful. I could never jump off the swing; I had to wait until it stopped, and then carefully stand up.

NOT A TEXTBOOK CASE

At the same time, the doctors were telling me that I should be very emaciated and pale, with stringy hair. They even gave me dentures for my top teeth in second grade, because they said I’d never grow adult teeth. Meanwhile, my hair was thick and long, I had beautiful skin, my teeth grew in fine, and I was really strong. Deep down, I knew that the doctors knew very little about how to treat this disease. But they insisted on even more excruciating operations.