Friday, November 24, 2023

A Fragile Heritage

We Mennonites love our heritage. We love family history. I'm pleased that I can trace my ancestors back ten or twelve generations to German or Swiss immigrants on a ship to Philadelphia in the early 1700s. We love that we can get together with about other Mennonite and find common connections. It is a bond, a privilege, a legacy, a heritage. 

But Sheryl Leinbach found that it is a legacy that may carry heartbreak and suffering. A fragile heritage. 

I met Sheryl ten years ago. She told me that she was writing a book about her family's crushing experience with maple syrup urine disease (MSUD). Her daughter was now healthy, but only after excruciating experiences of strict diets, painful procedures, many hospital stays, and, eventually, a liver transplant.

But the real agony was that MSUD was an genetic disease, passed through Lancaster Mennonite families and descendants. Sheryl's daughter had been so very sick because Sheryl had unknowingly married another MSUD carrier.

Over the years I talked to Sheryl numerous times about her book. We discussed writing memior, simplifying confusing genetic information, and Sheryl's desire that fewer children would suffer genetic diseases. 

But I didn't actually know much about Sheryl's story. Last week I picked up a copy of A Fragile Heritage at a bookstore in Lancaster County. I cracked it open one night before bed and didn't lay it down until after midnight. The same thing happened the next night. On the third night, I knew I couldn't miss sleep yet again so I placed A Fragile Heritage in another room less I be tempted to read until the last page. (I'm not sure what this says about my self-discipline.)

I'm not typically drawn toward medical stories, but Sheryl's story sucked me in. It wasn't just a story of amazing doctors who transform medical care (though it includes much about Dr. Morton and the Clinic for Special Children). It isn't just a story of God's grace carrying a family through very hard experiences - though it is certainly that. 

Like me, Sheryl wanted to protect her children from pain. Like me she wanted to be the perfect mom. She read the books, wrote the goals, made the plans. Like me she wanted to control the outcome of her children so they would grow up strong and healthy in body, mind, and spirit. But her best efforts failed. She couldn't be the perfect mom. Her child was very sick despite her best efforts, and no one knew when her child would get even sicker. Her husband cracked from the stress, and as a carrier, all this suffering seemed like their fault. 

And what about the future. Should they have more children? Could they bring more children into the world that could also have MSUD?  How could they prevent this disease from reaching their grandchildren? 

Sheryl's honesty and huge amounts of research show through this book. The only thing I knew about genetics were dim memories of science class and pea plants, but Sheryl's careful explanation made sense. Her vulnerability in showing the challenges of a child with a genetic disease will help me be more sympathetic to other parents with sick children. 

You can purchase A Fragile Heritage from Christian Light or at your local Mennonite bookstore or fabric store. Though I consider Sheryl a friend, I purchased the book at full price, and she doesn't know I'm doing this review.


  1. I'm currently reading this book too, and totally agree with your assessment of it. I find the genetics information very fascinating and admire Sheryl's vulnerability in sharing their story!

  2. This is a book I'll have to read. I've never heard of this before. Thanks for sharing Gina.

  3. Thank you for sharing this. I'm a pediatrician by training, and I was often deeply impressed by the love, perseverance, and deep suffering of families caring for children with chronic, debilitating disease. They were a joy to care for in my brief practicing days. I'm ordering a copy! I'm not Anabaptist, and I didn't know about Christian Light until reading your blog. What a treasure! Thank you. - Mary Kathryn

  4. I am going to have go get
    this book for a family at church. Their son had a liver transplant May 2023 dut to MSUD. Their
    faith tru it all has been incredible!


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