On the 29th of May 2020, Lisa (41) and Russell Swanepoel (38) from Berea, Durban, who for years longed to be parents, finally welcomed their twin daughters, Stevie-Mae, and Lily-Jean, into the world.
A few months later, the twins were diagnosed with epilepsy after suffering multiple seizures. Then the unexpected happened: Stevie-Mae passed away in her sleep, leaving her parents heartbroken and with many unanswered questions.
Doctors initially thought that Stevie-Mae had passed away due to SUDEP (Sudden Unexpected Death in Epilepsy), a condition whose root cause is not well understood.
In the depths of grief over the loss of Stevie-Mae, and terrified of what this meant for Lily-Jean, the family began a Genetic sequencing journey, which revealed that the twins were born with Dravet Syndrome, a rare, drug-resistant iteration of epilepsy.
The signs of Dravet Syndrome in Stevie-Mae had gone unnoticed, but her passing has given her sister, who is now 2 years old, a fighting chance. This now becomes Lily-Jean’s story.
Currently, Lily’s medical needs are best described as chronic and evolving. She needs constant monitoring as leaving her alone could prove fatal and close attention is paid to her medication.
“Lily’s days are variable as this syndrome has huge effects on her tiredness and 2 of the 4 drugs she takes have a huge impact on her appetite. So eating and sleeping is not a regular or sure thing for her to be able to easily do (let alone the restricted food choices she has on her diet)”
“Someone always needs to be with Lily, particularly when she is sleeping, for her seizure activity to be monitored. Mom and dad, Granny or a carer are always ready to step in to change her environment or administer oxygen or medication to help her deal with seizures.”
“Lily is overwhelmed by tasks and challenges in certain environments. And when she gets overwhelmed (too excited, too frustrated, too tired, too hungry, too hot, too cold) she starts having myoclonic seizures and myoclonic blinks with absences. Those seizure spells can affect her significantly.” – says Lisa
Through their courageous daughter, Lisa and Russell hope to create awareness about Dravet Syndrome so that it may never go unnoticed again. Lily-Jean has a long road ahead of her as she grapples with this disorder, but she is a fighter.
“Despite all of the above, Lily-Jean wakes up every day determined to try and make the most of it and captures the heart of everybody in her path. She is a light that we refuse to let this syndrome extinguish.” – says Lisa
Crowdfunding on BackaBuddy
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.
Funds raised by the campaign are being used to cover:
- Lily-Jean’s medical aid premiums so that her family can afford her medications, one of which has to be specially imported and approved from France
- Multiple paediatrician visits (any illness can dramatically increase the risk and magnitude of seizures), and Paediatric neurologist appointments to determine Lily-Jean’s progress.
- Weekly Occupational and Speech Therapy appointments to help Lily-Jean manage her early childhood development and assist us all with tools to help overcome the learning and developmental hurdles that are in her path
- A specialised daily carer
- Specialised foods and paediatric dietician
“The support we have received is overwhelming and humbling. Without it, we would not be able to support Lily in the way she needs to be able to deal with what an average day looks like for her. We are acutely and deeply aware of how lucky we are to have this support, and it’s made us even more aware of how other families may not have the same support, but have the same challenges”
“This is why our page and our purpose is to bring awareness to what it takes to successfully (that is different for everyone) manage complex and rare genetic disorders like Lily’s and the monster that is epilepsy. The more awareness we can raise, hopefully, the more families we can help directly or indirectly, and simply even assure them they are not alone.” – says Lisa
Support the Swannies on BackaBuddy:
https://www.backabuddy.co.za/lisa-swanepoel
Alternatively, donate via Snapscan:
https://pos.snapscan.io/qr/SupportingTheSwanies
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