My sister Maribel was born on Christmas Eve in 1980. Yes, a beautiful Christmas baby! I was only 5 years old but I remember loving being her big sister and enjoying to feed her. As an adult now, and having learned about Prader-Willi syndrome, I realize why we had to tap the bottle so that she would actually eat.
Since Maribel was my parents’ third child they could tell something was different about my sister. The doctors told my mom that her child was a “floppy” baby and that she was “retarded”. That’s it, nothing else, no further explanations or exams. And one last thing they told her – Maribel would never walk. How devastating for a mother to hear. My mom knew Maribel was developing differently and slowly but she never believed what the doctor had said. Maribel started crawling when she was a year and a half. But contrary to the doctor’s belief, Maribel did indeed walk AND run. And now she participates in Special Olympics!
Maribel was not diagnosed with Prader-Willi syndrome until she was 10 years old. It actually happened by chance that a social worker at the Los Angeles school Maribel was attending told my mom about the syndrome. Once a genetic test was done at UCLA, the diagnosis of PWS was confirmed. Knowing made everything more clear and learning about Prader-Willi syndrome allowed our family to understand Maribel better. We continued to adjust our home to Maribel’s needs. We wanted to make sure she lived a good quality of life. As she got into her late teens and early 20’s this became more difficult. She was now going from one day program to another, this group home to that group home, and finally, going in and out of psychiatric hospitals. This is not a way to live, for anyone. My mom was desperately seeking answers to help Maribel’s quality of life.
Finally in July of 2005, I met Jackie Mallow. I was doing “A Sibling’s Perspective” presentation at the annual PWSA conference. Jackie heard Maribel’s story, saw clips from my documentary Maribel and immediately she wanted to help. In just 5 months on December 2005 Maribel made the move from Los Angeles to Oconomowoc and was placed in one of PWHO’s group homes. They really did save Maribel’s life! At only 4’9” she was weighing in at 235 pounds. Now, only after a few years, she weighs a healthy 105 pounds! Maribel is so proud of herself – as we are too. Along with the weight loss, most of her medical complications are gone. She has definitely worked hard to get here. Not only is she healthier – and loves exercising, her behavior issues are very minimal! She loves participating in all her house activities and especially loves bowling and Special Olympics! She has also made wonderful friends and she has a great staff that love and care about her.
We are a few thousands of miles away and we miss her dearly but we know it’s all worth it because Maribel is healthy AND happy. I love talking to her on the phone everyday and hearing all about her activities, accomplishments and plans. Maribel is the most thoughtful, warm, sweet, loving and caring person I know and she deserves the best. PWHO really is the best. It is a phenomenal organization and we can never thank them enough. Together with the staff’s help, Maribel has become a healthy person that continues to be motivated to live a healthy lifestyle.
To obtain and view “Maribel” the documentary. Go to www.maribelrivera.com. To watch her update video, please click below.