Emily Rapp Writes about Losing Her Son to Tay Sachs Disease

Filed under: Tay Sachs Disease,Tay Sachs Disease Stories - 20 Mar 2013  | Spread the word !

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In January 2011, Emily Rapp was a happy woman. She was a creative writing professor in Santa Fe, published author, happy wife and, most importantly, happy new mother. Her happiness suddenly vanished when she and her husband found themselves in a pediatric ophthalmologist’s office to learn that their son, Ronan, was suffering from an incurable and fatal disease that gradually robs a child of his nervous system – Tay Sachs Disease.


She recalls going to the ophthalmologist with her 9-month-old son because she was worried about his development and was hoping that the eye doctor would rule out vision problems as the culprit. Checking the little boy’s retinas, the doctor saw “cherry-red spots on the backs of his retinas”, as Rapp writes in her new memoir. Ronan’s diagnosis was given that same day – Tay Sachs disease. It is always fatal. There is absolutely no cure. The worst fear of every mother smashed her: Ronan would likely die by the age of 3.

Children with Tay Sachs lack an enzyme in charge of breaking down specific chemicals in the nerve cells of the brain. When these chemicals aren’t removed, they build up, and the children lose their ability to function. Seizures and loss of sight and movement are all common symptoms of the child’s body shutting down.

Emily and her husband did not even need a second opinion. “I knew it was like the worst thing that could possibly happen”, she said.

Three days after Ronan was diagnosed with this terminal illness, Emily started blogging about the experience. Initially, she posted to tell friends and family: “I felt really raw. The writing gave me a shield. It was a way to feel connected to my people without being on the phone all the time”, she said.


However, she gathered a broader audience, which grew beyond her immediate circles. Numerous visitors came to her site after reading “Notes from a Dragon Mom”, the op-ed she wrote about parenting a sick child for The New York Times. All those people stayed by her side, even if just virtually, until the end.

On February 15, just shy of his third birthday, Ronan passed away.

Less than a month after the tragic event, his grieving mother published The Still Point of the Turning World. The book is both a memoir and a meditation on how to grieve for a living child who does not have a future. Her new book is filled with prayers, poems, mythologies and novel excerpts she revisits in search for answers, in the attempt to untangle the wild morass of grief that confronts her.


Emily becomes a “dragon parent”, a term she uses to describe parents of terminal children who “have an underappreciated ability to force people to face their worst fears”. Another term she uses widely in the book is the “blackness” of the tragedy.

Even though the book, just like her short pieces, is bind-bogglingly sad, it is also forceful, inspiring, and filled with lessons for parents. She did not write the book to receive sympathy, though. She even writes: “I’d so much rather have an e-mail that says something brutal and terrible and true than a sympathy card that’s made of soft-to-the-touch parchment, the edges gently serrated, decorated with loathsome, uniform birds…”.

This may also be the reason why the book ends while Ronan is still very much alive. “When I finished the book I felt that the story was done and what I has wanted to say about him was done”, Emily explains. “The rest of the time was just something I had sort of anticipated but didn’t necessarily need to be in the narrative”, she adds.


Rapp, who was born with a congenital birth defect that led to the amputation of one of her legs, says Ronan’s diagnosis really shifted her understanding of luck and what it means to be lucky — or blessed — in life. Emily had previously published a memoir about her life as an amputee and poster child for the March of Dimes, called Poster Child.

As a final note, here is another quote from The Still Point of the Turning World:

Learning how to live with death – that final wilderness from which none of the parents of children with Tay Sachs returns – was also about learning how to live.

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