“The thing I hate hearing the most is, ‘You just need to wait and see.’ She’s so rare the doctors don’t know the answers to our questions.”
‘She’ll never walk or talk. Her future is unknown.’: Mother details journey with daughter’s rare chromosomal disorders
‘She won’t live. It’s VERY severe.’ Tumors were everywhere. Only 70 people in the WORLD have what I have.’: Woman with Juvenile Hyaline Fibromatosis shares journey, ‘Teach your kids not to fear differences’
“Kids spread rumors, saying ‘You smell bad!’ They told others not to talk to me. My teacher said, ‘You’ll never graduate anyway. What’s the point?’”
‘She’s beautiful, but something’s wrong with her heart.’ HOW? I was only 23! I clapped my hands over my face and WEPT.’: Mom births baby with Truncus Arteriosu, says motherhood is all about ‘rolling with the punches’
“My husband drove me down to the waterfront, my idea of motherhood now a pile of dust and rubble. Was I really made for this? We’d both been crying for several hours. He opened the envelope. ‘It’s a girl!’ his voice cracked. When they wheeled her away, we gave our final kisses. No matter how long she was with us, Shirley was a gift.”
