Ener Memorial, from someone with a genetic disorder

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Dear Villanovans,I heard today about the Ener dedication (first I’d heard of the story at all, that I know of) and was deeply horrified. It is one thing to say that a tragic story like this should raise awareness of a mental disorder; it is quite another to honor the person. It’s like naming a building in honor of John Hinckley to raise awareness of schizophrenia.I have a genetic disorder, Marfan syndrome. It is autosomal dominant, and my daughter has it, as well. I married a woman who shares my deep pro-life Catholic convictions, who says that children with “special needs” are the best people around, as they bring so much joy to the world.This past week, an 18-year-old young man with “severe infantile” Marfan syndrome, whose mother was known to me through an e-mail group, passed away. The articles on his death spoke of what joy he brought to everyone he met, and how the doctors had originally told his mother he’d die before he was a year old. (Marfan syndrome can range in severity from that to a person not having serious problems till middle age).It horrifies me every time I hear of a person with a severe illness or disability being told–or telling other people–that his or her life is not as worthwhile as someone else’s, or too burdensome. . . . Or, worse, that the “compassionate” thing to do is to “spare” this person a life of suffering.My wife and I have been taking steps towards forming our own pro-life apostolate, the Lewis Crusade (members.cox.net/lewiscrusade) with a three-fold purpose: 1) to promote recognition of the grief of couples who suffer miscarriages (and the personhood of their dead babies); 2) to fight for ethical medical research, against embryonic stem cell research, etc.; and 3) to promote the dignity of people with genetic disorders.We have been told, by family members, by people who claim to be Catholic and/or pro-life, that we should not have had children at all; that we have no right to even expect medical care for our daughter, or watch out for her special needs, since we knowingly allowed her to be conceived with Marfan syndrome. . . . This kind of attitude has plagued me my entire life, and is far more conducive to despair than my condition itself.It is one thing to live in physical pain your entire life. That can be managed; that can be overcome. The thing that cannot be overcome is when family members, acquaintances, and society at large say that you are less of a person because of it.

Pax et bonum,John C. HathawayFredericksburg, VA