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.

Donate to this charity

Donations

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

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Statistics

Donations to date

R 172 246.46

Fundraising target

R 500 000.00

Donate

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.