Twin’s unexpected death reveals rare diagnosis, that could spare her sister’s life

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On the 29th of May 2020, Lisa and Russell from Berea, Durban, had longed to be parents for many years, when their twin daughters, Stevie-Mae, and Lily-Jean, were finally welcomed into the world.

They could not have been more in love with their two precious girls.

Little more than a year later, Stevie-Mae passed away in her sleep. They lost a daughter, and their darling Lily-Jean lost her sister.

In the months prior to this tragedy, both their daughters had been diagnosed with epilepsy after multiple seizures.

Stevie-Mae’s passing, their doctors told them, was likely due to something called SUDEP (Sudden Unexpected Death in Epilepsy). What was perhaps most devastating for them about Stevie-Mae’s passing were the unanswered questions.

Why did this happen to her?

In addition to being in the depths of grief over the loss of Stevie-Mae, they were also terrified of what this meant for Lily-Jean. This set the Swanies on their journey to understand why they lost their daughter.

Genetic sequencing revealed that their twins have Dravet Syndrome, a rare, drug-resistant iteration of epilepsy that takes hold of an otherwise healthy life.

The signs of Dravet Syndrome in Stevie-Mae had gone unnoticed, but her passing has given her sister a fighting chance. This now becomes Lily-Jean’s story.

Through their courageous daughter, they hope to create awareness about Dravet Syndrome so that it may never go unnoticed again. Lisa, Russell and Lily-Jean have a long road ahead of them as they grapple with this disorder, but Lily-Jean is a fighter.

To support Lily-Jean as she takes on this uncommon, drug-resistant, and refractory enemy, the family have launched a crowdfunding campaign on BackaBuddy that has since raised over R170 000, with contributions from 130 donors.

One of their daughters saved the other. We hope that Lily-Jean’s story might do the same for others.

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