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Chicago, 1937
In multiple-kid families, you can see a range of shared and specific variations on the theme of the parents’ DNA. All four of Lydia and Howard’s offspring inherited their father’s prominent, pointy chin; the younger three also got his dark wavy hair and deep brown eyes. A pair of recessive genes, one from each of her parents, made the eldest, Doris Gene, the only blue-eyed blonde within memory on either side of the family. In the third child, Gloria, a different pair of recessive genes was expressed as a mutation in gene FXN residing on chromosome 9. This couldn't be seen, and its effects took several years to emerge.
The little Tatros were urban kids who did most of their running around in Hamilton Park, where their mother accompanied them daily, pushing the current baby in the worn wicker pram purchased back in the days before Lydia figured out how babies get born. At about the time that the youngest, Jackie, was getting old enough to clamber out of the carriage and start toddling to the park under her own steam, Gloria was suddenly, unaccountably clumsy, lagging during the 3-block walk and sometimes tripping over her feet when Lydia gave the OK for the kids to tear across the grass to the playground.
At first, Lydia thought it might a weird phase, some temporary glitch in the so-far seamless development of the children that delighted and exhausted her in equal measure. But it wasn’t temporary. Gloria was pale, and she tired easily. Smart, sweet and heretofore healthy, she was not a kid who complained, but something was clearly wrong. When she had a nasty fall and cut her scalp, Lydia took her to the hospital to get stitched up and talked to the doctors about her concerns. Gloria was hospitalized for days of tests. When Howard and Lydia were summoned for the results, they were told that their daughter was suffering from a disease that neither of them had even heard of. It had someone else's name, but Gloria had inherited it from them. There was no cure.
Friedreich’s ataxia is a wasting neurological disorder that results in the inability to coordinate voluntary muscle movements—that’s the ataxia part, caused by degeneration of nerve tissue in the spinal cord and the nerves extending to the arms and legs. Mental capacity is undiminished. Gloria’s mind would continue to develop, but her body would grow weaker and weaker. She would lose the ability to walk as her muscles deteriorated.
Of the host of medical problems associated with the disorder, heart disease is the worst. At age 5, Gloria's heart was already damaged, said the doctors. Her parents were told not to expect her to live to adulthood. Hearing these words, terrible beyond telling, Lydia reached out for Howard. Although his body could still be seen in the chair next to hers, the rest of him was in fact far away and would not be coming back, ever. Howard was already gone, for good; what remained for him now was refining the details of how to leave his wife and children, as soon as possible, before things got really tough.
