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.
Support the Swannies on BackaBuddy:
Alternatively , donate via Snapscan:
For updates, visit:
Connect with Porky’s
Porky’s People NPC, is a non-profit organisation based in South Africa. We share inspiring South African stories, charitable causes and information worth spreading. 🌍 💜Our passion is people and non-profits.
Create a crowdfunding campaign
South Africa’s leading crowdfunding platform, BackaBuddy has supported more than 10 000+ individuals and charities in setting up fundraising campaigns for medical fees, tuition and various causes in South Africa. The platform has thus far raised over R310 Million.
- Raise funds for an individual or cause.
- Register your non-profit organisation.
- Create a crowdfunding campaign to raise funds for a non-profit organisation.