In an extended essay in the [UK] Daily Mail, BBC writer Heidi Thomas tells the story of her beloved younger brother David, who had Down syndrome. She says he was repeatedly failed by the medical establishment, both during his life and again after his death.

David needed surgery for a heart problem, but was forced to spend eight years on a waiting list before the surgery could be performed. By that time, his heart was weakened too badly for him to survive. He died in 1985.

Then, in 2001, Thomas learned that doctors had removed David’s heart from his body and put it on display in a museum without informing or seeking the consent of his family. She writes that the revelation was devastating, and says David continues to be a part of her life all these years after he died.

It is because he is gone and we cannot bring him back, not for a day, not for a single hour. And yet, even as I weep, I refuse to say I miss him because he is with me everywhere I go.

If I am patient, it is because of him. If I don’t judge people by appearance, it is because of him. If I have a mordant sense of humour, if I love a daft joke or a singing dog, if I shout at people who abuse disabled car parks, it is not because I was born like that, it is because I became David’s sister, and loving him shaped me in a way loss can’t erase.

This entry was posted on Sunday, June 1st, 2008 at 7:45 pm and is filed under Down syndrome, NOT2BEMISSED, celebrities, commentary, families, first-person, intellectual/developmental disabilities, personal stories, siblings, television. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.  Email This Post