Stories of Joy
There is Joy
“Surveys reveal people with disabilities consistently report a quality of life as good as, or sometimes even better than, that of non-disabled people… Someone like me, born with restricted growth, has always been that way. Even if life is sometimes hard, we are used to being the way we are… Sometimes, the part of life that is difficult brings other benefits, such as a sense of perspective or true value that people who lead easier lives can miss out on. If we always remembered this, perhaps we would turn out to be more accepting of disability and less prejudiced against disabled people.”
-BBC “A Point of View: Happiness and disability”, 2014.
The Marlee Factor Foundation
Marlee was born with Tuberous Sclerosis. This means tumors grow throughout her body, particularly in her brain. Marlee’s adoptive parents knew this, but decided to adopt anyway. Now, 9 years later, Marlee’s unconquerable spirit brings joy to everyone around her. Her parents have started a foundation in honor of her fight to survive. They help children with chronic illness or special needs get the help they need.
View their work at www.marleefactorfoundation.org
How genetic testing helped a mother and father support their son with Cystic Fibrosis
“When I was pregnant with my oldest, we found that my husband also carried Cystic Fibrosis. My husband and I both carry delta F508 mutations of Cystic Fibrosis.”
“So we had all of our kids cord blood tested when they were born to see if they had Cystic Fibrosis.”
“And about fifteen months ago we had our son Cahl and he had Cystic Fibrosis. It wouldn’t have changed our decisions we made… it wouldn’t have changed having any of my kids.”
“Having a firm understanding and knowledge of our son’s genetic mutation helps us to be able to provide him with the best life that we can and care for him in the best possible way that we know.”
-Cheree, Sept. 2017
How may a high quality of life be achieved?
“Quality of life is dependent upon finding a balance between body, mind and spirit in the self and on establishing and maintaining an harmonious set of relationships within the person’s social context and external environment.”
“The disability paradox: high quality of life against all odds.” Social Science and Medicine, 1999. Vol. 48. 977-988
“The preponderance of evidence suggests that many patients with chronic illness and disability are able to emotionally adapt to their circumstances and experience relatively high levels of mood and Quality of Life…Even when patients do not fully adapt to their illnesses, they frequently report higher levels of well-being than what is imagined by healthy people under similar circumstances.”
“People experiencing a wide range of illnesses and disabilities often report paradoxically high levels of [Quality of Life] and mood. Many people are understandably skeptical that such self-reports are largely accurate. Even when care is taken to explore for scale recalibration, and even when great effort is taken to collect data on moment-to-moment mood rather than relying on global self-reports, the disability paradox persists: People experiencing chronic illness and disability are happier than what healthy people predict they would be under similar circumstance… [These] extreme predictions contribute to the phenomenon of the disability paradox. Moreover, they put people at risk for making poor decisions.”
“Misimagining the Unimaginable: The Disability Paradox and Health Care Decision Making.” Health Psychology, 2005. Vol. 24, No. 4(Suppl.), S57-S62
Your child is likely to be happy
“In an international survey of 272 parents of children with [Trisomy 18 (Edwards syndrome)] or [Trisomy 13 (Patau syndrome)] (76% within the United States), parents reported being told by a health care professional that their child’s condition was incompatible with life (87%), the child would have a life of suffering (57%), or that care of the child would ruin their family (23%). Of the respondents, more than 25% had a child with T18 or T13 still living, with a median age of 4 years. Although 50% reported that care of a disabled child was more difficult than expected, 97% reported that their child was happy. These study results may be limited by selection bias because the survey did not include women who terminated the pregnancy or experienced fetal loss, or those whose infants died shortly after birth… [However,] these testimonials challenge the incompatible-with-life and life-of-suffering perspectives.”
“Using Patient-Centered Care After a Prenatal Diagnosis of Trisomy 18 or Trisomy 13 – A Review” JAMA Pediatrics, April 2017, Vol. 171, No. 4, 382-387.