Supporting The Swanies
- By: Friends of the Swannies
- Short URL: https://www.backabuddy.co.za/lisa-swanepoel
Personal message
On the 29th of May 2020, Lisa and Russell’s lives changed forever when their twin daughters, Stevie-Mae, and Lily-Jean, were born. For years, they had longed to be parents and they finally were.
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.
By pledging towards Supporting the Swanies you will help Lily-Jean as she takes on this uncommon, drug-resistant, and refractory enemy.
One of their daughters saved the other. We hope that Lily-Jean’s story might do the same for others.
Donations
- Jun 28, 2022 - R 1 081.00
- "Love you guys" - S
- Jun 26, 2022 - R 5 000.00
- "Sending love , strength and positive vibes" - Bruce
- May 29, 2022 - R 1 081.00
- "Love you guys" - S
- May 20, 2022 - R 200.00
- "Keep strong " - Anonymous
- May 04, 2022 - R 730.00
- "
The journey is long, may your hearts grow stronger each day
" - Anonymous - May 03, 2022 - USD $ 1 226.44
- "For Lily xoxox" - Baker Construction
- May 03, 2022 - R 200.00
- "
Love you always loved you with all my heart
" - Rudo - May 02, 2022 - USD $ 31.58
- "With love and strength " - Gibbs family
- May 01, 2022 - USD $ 994.91
- "Lots of love to Lily, Russell and Lisa :) " - US Swanies (Graham, Callie, Ellie, and the new one
- Apr 30, 2022 - USD $ 632.34
- "Stay strong little one" - Jared Fisher
- Apr 30, 2022 - USD $ 31.62
- "Thinking of you all and sending lots of love Silvia and Alec xx" - Mackay Silvia
- Apr 30, 2022 - R 200.00
- "Always in my thoughts and prayers xxx" - Anonymous
- Apr 30, 2022 - USD $ 31.42
- "Sending love and prayers " - Lesley
- Apr 29, 2022 - R 1 000.00
- "The one who left gentle footprints on your hearts left a story worth telling.Even those that never fully blossom bring beauty into the world. May GOD comfort you all. Family of Legends!!" - Diverse Iron
- Apr 29, 2022 - R 1 000.00
- "Think of you all daily and are in my prayers. " - Leighann
- Apr 29, 2022 - R 1 000.00
- "
Hugs and prayers xxx
" - Linda Biggs - Apr 28, 2022 - R 1 081.00
- "Love you guys" - S
- Apr 28, 2022 - R 1 081.00
- "Lots of love to you guys " - Alistair, Stef, Eva Holman
- Apr 27, 2022 - USD $ 315.26
- "Your beautiful family always in our thoughts. Sending much love and strength xx" - Sam, Shaun, Adrian and Michael
- Apr 27, 2022 - R 500.00
- "May love and strength forever surround you. " - Bailey & Casey
- Apr 26, 2022 - R 200.00
- "Sending lots of love and support to you all and most especially Lily!" - Cathy Casalis
- Apr 25, 2022 - R 200.00
- "Thinking of you all" - Leah Hargreaves
- Apr 17, 2022 - USD $ 34.14
- "So much love to all you!" - Wyatt and Cayley
- Apr 15, 2022 - R 1 500.00
- "." - Judy&Ian
- Apr 11, 2022 - R 500.00
- "
"One day you'll realise how hard it was, and how well you did." - Charlie Mackesy
" - Michelle & Steve & Sarah-Jane - Apr 11, 2022 - R 500.00
- "
We serve a GREAT BIG God️️
" - Anonymous - Apr 08, 2022 - R 200.00
- ":)" - Anonymous
- Apr 08, 2022 - R 1 000.00
- "
Strength ~
" - Anonymous - Apr 07, 2022 - USD $ 119.80
- "Our thoughts are with you guys in this time. Keep positive my friends." - Jordan and Rachel
- Apr 07, 2022 - USD $ 27.26
- "Something to go towards a very long and very happy life for Lily " - Angie
- Apr 07, 2022 - R 870.00
- "
to make the journey a tiny bit lighter
" - Sending love.... - Apr 07, 2022 - R 18 000.00
- "18 is the numerical value for life ( Chai - translated from Hebrew-English, being life) This is our wish and blessing for your family." - Truval Team
- Apr 07, 2022 - USD $ 68.15
- "<3" - Christina
- Apr 06, 2022 - R 500.00
- "Stand strong in your faith ️" - The Eagar’s
- Apr 06, 2022 - R 500.00
- "Thinking of you all " - Anonymous
- Apr 06, 2022 - R 1 000.00
- "With warm wishes" - Beets
- Apr 06, 2022 - R 1 000.00
- "Sending prayers and good vibes your way. Xxx" - Brenda Ballack
- Apr 06, 2022 - R 1 200.00
- "Sending you lots of love. " - Clarks
- Apr 06, 2022 - USD $ 136.11
- "thinking of you all!" - Kev
- Apr 06, 2022 - R 500.00
- "Love, strength and God's richest blessings on your little family xxx" - Thorney
- Apr 05, 2022 - R 3 000.00
- "Sending love and grace to you all. " - Kerryn and Brett Walker
- Apr 05, 2022 - USD $ 20.00
- "Thinking of you both constantly and wishing eternal light, strength and protection for brave Lily-Jean" - Lis and Wil
- Apr 05, 2022 - R 200.00
- "
Your family is in my prayers.
" - Marelize - Apr 05, 2022 - R 1 000.00
- "Joshua 1:9 Be strong and courageous" - Anonymous
- Apr 04, 2022 - USD $ 102.43
- "For Little Lily " - Alison Lns
- Apr 04, 2022 - R 1 000.00
- "
For our Swanie Warriors, we love you
" - Bammy & Grandpops - Apr 03, 2022 - USD $ 34.09
- "-" - Serena
- Apr 01, 2022 - USD $ 68.44
- "Sending you all the support and love in world from London. Your story has left an imprint on my heart and I wish you the absolute best in your journey going forward. Xxx " - Sarah Viljoen
- Apr 01, 2022 - R 1 000.00
- "Love and strength " - coelhoculture
- Mar 31, 2022 - R 1 000.00
- "Thinking of you & your family very much! Keep shining your Light brave Lily xxx " - Greg & Jess Chaplin
- Mar 31, 2022 - USD $ 150.00
- "Thinking and praying for you all every day xxx" - Stef and Mark
- Mar 31, 2022 - R 2 250.00
- "Lots of love to you guys " - Alison Holman, Sue Arkell, Marlene Bornman
- Mar 31, 2022 - R 500.00
- "Thinking of you guys x" - Husna
- Mar 31, 2022 - R 3 000.00
- "Stay strong. “The heartiest plants survive because they weather the storms and never stop reaching for the light”" - J
- Mar 31, 2022 - USD $ 69.00
- "Fight like hell Swanies. " - Jenna and Deva
- Mar 31, 2022 - USD $ 34.40
- "This is a loving mission. Good luck!" - Rachael
- Mar 30, 2022 - R 350.00
- "Xxx" - Anonymous
- Mar 30, 2022 - R 1 000.00
- "Lots of love to you guys " - Alistair, Stef, Eva Holman
- Mar 30, 2022 - R 1 081.00
- "Love you guys" - S
- Mar 30, 2022 - USD $ 137.60
- "Sending so much love to an incredible family!" - Matt and Ali
- Mar 30, 2022 - USD $ 75.00
- "With our love" - Jenn and Ida
- Mar 29, 2022 - R 1 000.00
- "Keeping you guys in my prayers " - Mel and Mat
- Mar 29, 2022 - R 500.00
- "You have got this! " - Mystique Meanwell
- Mar 29, 2022 - USD $ 136.36
- "Best wishes to you all, Boothie" - Boothie
- Mar 29, 2022 - R 200.00
- "Sending light and love" - B
- Mar 29, 2022 - R 500.00
- "Stay strong. Thinking of you all so much xx" - Anonymous
- Mar 29, 2022 - R 1 000.00
- "Thinking of you xxx" - Anonymous
- Mar 29, 2022 - R 1 000.00
- "Sending you love and strength." - Lauren O
- Mar 29, 2022 - R 200.00
- "Twins forever" - Simone
- Mar 29, 2022 - USD $ 68.18
- "Love & prayers to you Swanies" - Sarah-Anne
- Mar 29, 2022 - R 1 000.00
- "Sending lots of love xxx" - Tamsin Hornbuckle
- Mar 29, 2022 - R 1 000.00
- "We love you guys and are praying for you and walking along side you ! Be brave and bold! Gods got you " - Farren Fifi Grace
- Mar 29, 2022 - R 500.00
- "
..
" - Anonymous - Mar 29, 2022 - R 1 000.00
- "
For LillyBean xxx
" - Belinda Perrott - Mar 29, 2022 - R 200.00
- "Thinking of you x " - Tess
- Mar 29, 2022 - R 2 000.00
- "Keeping you and your family in our thoughts Bismark" - Jamie and Megan Renton
- Mar 28, 2022 - R 200.00
- "Thinking of you Xx" - Claire
- Mar 28, 2022 - R 500.00
- "Sending you & your beautiful family lots of love Russ" - Candice
- Mar 28, 2022 - USD $ 166.05
- "No one should go through this pain and uncertainty. X " - In Gods Name
- Mar 28, 2022 - R 1 000.00
- "Love and prayers for Lily" - Bev Brossy
- Mar 28, 2022 - R 100.00
- "X x" - Anonymous
- Mar 28, 2022 - R 1 000.00
- "Sending love. " - Emma
- Mar 28, 2022 - R 1 000.00
- "Thinking of you all x" - Barry Swanepoel
- Mar 28, 2022 - USD $ 137.37
- "Sent with love and good wishes. " - Van
- Mar 28, 2022 - R 100.00
- "🤍" - Ash
- Mar 28, 2022 - R 3 000.00
- "Hope and love" - Pamela
- Mar 28, 2022 - R 200.00
- "Go Swannies" - Carin Destbomes
- Mar 28, 2022 - R 360.00
- "I cannot imagine your plight. Sending love and strength - and healing light to your precious little girl." - Anon
- Mar 28, 2022 - USD $ 68.68
- "Thinking of you guys " - Chantel Johnson
- Mar 27, 2022 - R 5 000.00
- "God Bless you 2 & the journey ahead… " - Jason & Bronwinn
- Mar 27, 2022 - USD $ 68.66
- "Praying for courage, persistence and many moments of joy on your journey with little Lily" - Anonymous
- Mar 27, 2022 - USD $ 40.00
- "Think of you and your beautiful little girl. Your grace & strength is an inspiration. Sending you lots of love x" - Clare Davies
- Mar 27, 2022 - R 5 000.00
- "All my love and prayers. " - Sonia
- Mar 27, 2022 - R 5 000.00
- "She shines! " - Diana
- Mar 27, 2022 - USD $ 137.33
- "Thinking of you x" - Skye
- Mar 27, 2022 - R 5 000.00
- "Sending you all love and strength " - Lauren
- Mar 27, 2022 - R 1 000.00
- "Love you guys" - S
- Mar 27, 2022 - R 5 000.00
- "Thinking of you all. Sending love, light and strength. X " - Jane
- Mar 27, 2022 - USD $ 34.33
- "Sending love x" - Robynn
- Mar 27, 2022 - USD $ 68.66
- "Thinking of you every day x " - Tarryn
- Mar 27, 2022 - R 1 000.00
- "Here to support in any way we can!" - Hannah
- Mar 27, 2022 - R 1 000.00
- "Sending you lots of love and light. Know that you have an army of support behind you!" - Tania Colyn
Statistics
Lisa Swanepoel Medical Cause

Lily-Jean, is courageously fighting a battle with Dravet Syndrome and needs our help! Durban, KwaZulu-Natal
Dravet Syndrome is a rare, catastrophic form of Epilepsy that causes behavioural and developmental delays. There is no cure. Lily-Jean can suffer hundreds of seizures a day; sometimes, one seizure lasts close to 30minutes.
Despite having medical aid coverage, Lily-Jeans parents spend thousands of rands a month in out-of-pocket medical costs so Lily-Jean can have the medications she so desperately needs. This is a tremendous strain on Lily-Jean's family.