When people learn that my son Silas and his wife Jenn Power adopted a pair of identical twins with Down Syndrome, they often say one of two things: “I could never do that,” or “You must be saints.” I love Silas and Jenn beyond measure, and admire them hugely, but I can attest they are not saints. The explanation for their decision to adopt Josh and Jacob lies elsewhere. As members of the L’Arche Community in Iron Mines, Orangedale, and Mabou, Cape Breton, Silas and Jenn have lots of experience working and living with developmentally disabled people. It’s what they...

This winter, Contrarian hosted an interesting discussion about whether Down syndrome needs a cure. Now reader Denis Falvy offers an intriguing footnote. It seems that people with Down syndrome rarely get tumors. Recent research at Children’s Hospital in Boston, reported in the journal Nature, suggests that a gene (gene 231) on the extra chromosome (chromosome 21) carried by people with DS may inhibit cancer by blocking the activity of a protein tumors need to grow. Money quote: The gene suppresses the growth of new blood vessels that cancers need by blocking the activity of the protein calcineurin, suggesting a new...

Last Thursday, the Cape Breton Island Film Series showed Pedro Almodóvar’s Broken Embraces, which Roger Ebert describes as, “a voluptuary of a film, drunk on primary colors, caressing Penelope Cruz, using the devices of a Hitchcock to distract us with surfaces while the sinister uncoils beneath.” It’s a lush, layered melodrama, with lots of surprises hidden among its folds, including this utterly unexpected footnote to Contrarian’s conversation about whether medical science should try to “cure” Down syndrome. The central character, Harry Caine (Lluís Homar), is a movie director who turns to script-writing after a brutal car accident leaves him blind....

Motherlode, a New York Times blog on parenting, has picked up on Contrarian’s discussion about potential treatments for the intellectual impairment associated with Down syndrome — and touched off quite a debate of it its own. Our own discussion began with L’Arche Cape Breton Community Leader Jenn Power’s disquiet at the assumption that Down syndrome constitutes a disease in need of curing. Jenn, who is both the adopted mother of identical twins with Down Syndrome and — disclosure — my daughter-in-law, spoke eloquently of Down traits that don’t need fixing: [I]ncredible smiles, overflowing affection, stubbornness, great sense of humour, cute...

In late November, Contrarian reported that researchers at Stanford University had used a drug therapy to improve the learning skills of mice with a form of Down syndrome. Jenn Power, community leader at L’Arche Cape Breton and mother of twin boys with Down’s, found the research distressing. She said people with Down’s don’t need a cure; they need “a society that values what they have to offer.” This produced a fascinating discussion with many thoughtful contributions on all sides of the issue. At Contrarian‘s request, Dr. Ahmad Salehi, M.D., Ph.D., the lead researcher on the Stanford University study, has responded...

Pamela Wilson, Special Needs Children Editor of the Bella Online website, which bills itself as the second-largest women’s website in the world, offers a link to Down syndrome advocacy on Twitter, and further thoughts on our discussion of whether Down syndrome needs a “cure.” We really don’t know what choices we would make if a safe, effective “cure” was developed for the range of intellectual disability found in most individuals with Down syndrome. Looking at the history of ‘treatments‘ for children with Down syndrome concocted in the past quarter of a century would make any parent hesitant to embrace a...

Previous posts questioning the efforts to “cure” Down syndrome begin here and here. Tora Frank of Madison, Wisconsin, whose daughter Asha has Down syndrome, offers a different view: I would be eager to provide my daughter with a medication that could help her to learn more quickly, struggle less with everyday tasks, communicate better with those around her, make her needs known, allow her more independence. No, not eager—I would be *frantic* to do so. But is that assertion a comment about how I value my daughter? Am I somehow saying that I want her to be different—or that I...

This thread  (starting here and here) questioning efforts to “cure” Down syndrome began with a quick email from Jenn Power, community leader at L’Arche Cape Breton, mother of identical twins with Down syndrome, and—disclosure—Contrarian‘s daughter-in-law. At Contrarian’s request, she has elaborated: In the end, for me, this all comes back to people. Josh, Jacob, Mary, Cathy, Kate, Janet…these people have Down Syndrome. These people are my family, my friends, my teachers. Without the benefit of that extra chromosome, they would not be who they are. Their intellectual “impairment” gives them an insight and an emotional intelligence and maturity that I...

Previous posts questioning the efforts to “cure” Down syndrome begin here and here. Peter Elliott, Research Director for the Down Syndrome Research Foundation UK, writes: In today’s world, the parents of children with Down syndrome can raise their hopes and change the future for their child. Surgeons can repair a malformed heart and this is very common in Down syndrome.  Internal organs can be repaired, including Hersprungs where the baby can die within days of being born.   Then there is the very high risk of Leukemia, Celiac disease, and there is an impaired immune system which makes survival difficult for...

Previous posts questioning the efforts to “cure” Down syndrome begin here and here. Silas Barss Donham, husband of Jenn Power, father of Josh and Jacob, and son of Contrarian, writes: A person’s view of this type of medical research depends on whether one sees Down syndrome as a disease or as a natural genetic variation, like left-handedness or hair colour.  Most people in our society fall into the first group, but then, most people in our society don’t know much about people with intellectual disabilities.  I suspect most people in our society wouldn’t imagine the second group exists. This is...