| Illness |
It is not easy to live with a child who has this syndrome, especially when she asks for food. I tell her ‘No,’ and she starts to cry and get upset, screaming and saying things to me that I do not understand, but I do not give up. (Caregiver 051) I was nervous. I didn't know what was happening. Yet in the delivery room, when I saw my baby, she was beautiful! What was the problem? When I talked to a geneticist the next day, I started crying. (Caregiver 074) Broken dreams, the feeling that something has changed forever—that my life has changed. I used to be so self-confident, so independent, and suddenly, I felt fragile, scared, and alone—dreadfully alone, unable to react. (Caregiver 031) When my son was born, the doctors immediately told me that something was wrong. It was terrible. I was young, and he was my long-awaited first child. (Caregiver 019) |
I feel proud. My disability does not scare me. (Adult with PWS 030) Sometimes I feel happy, and sometimes I am sad because of my disease. (Adult with PWS 005) I want to be with the other non-disabled kids—my only problem is eating. (Minor with PWS 007) I mostly feel happy, but sometimes I am a bit sad about my illness. I am happy because the Lord created me, and I like myself as I am when I came into existence. (Adult with PWS 009) |
| Sickness |
Food is not the only danger: anything can happen to my son, he can be tricked or manipulated. (Caregiver 062) When my daughter was diagnosed with Prader-Willi syndrome, I felt terrible, because I couldn't accept the syndrome and because I saw the other mothers with their children, happy and carefree, and I knew it wouldn't be like that for us. Over time, I learned to accept the situation. My daughter's disability does not mean not living—it means living differently. (Caregiver 049) I was upset. It was hard to believe that my daughter could not have a future like all the other children. (Caregiver 052) Often, we felt desperate, especially as we thought about our son's future, but then, we learned to deal with problems as they arose. (Caregiver 027) |
I do not feel equal to the kids of my generation. I hate myself. I want to die. Sometimes I would like to be a boy like the others and to always be happy. (Adult with PWS 014) The effects of Prader-Willi syndrome last throughout one’s lifetime. It is difficult to communicate with others, even with my own parents. (Adult with PWS 016) Other people are bad. They do not care about me because I have this syndrome. (Minor with PWS 007) On the one hand, I feel different from others because I am disabled and hypotonic. On the other hand, I do feel like them because I am lucky enough to walk, to see and to hear. (Adult with PWS 032) |
