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Supporting The Swanies

Supporting The Swanies

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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

  • 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

Donate to this charity

Statistics

Donations to date

R 172 246.46

Fundraising target

R 500 000.00
Donate

Lisa Swanepoel Medical Cause

Lisa Swanepoel Medical Cause  Logo

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.