Raising money for Sydney Children's Hospital, in memory of Julius Nikolasi Afeaki
Julius Nikolasi Afeaki’s Story
Our little love was born on the 28th of September 2024. After one week in special care, we brought Julius home filled with so much excitement to begin our lives as a family of 3. He was the sweetest baby who would stay up for hours and loved listening to music.
At just 8 weeks old, our lives changed when Julius was admitted to Sydney Children’s Hospital in Randwick. After a series of tests, we were told our baby had cataracts in both eyes and was showing signs of liver complications. Within days, he underwent major surgery to replace both eye lenses, while multiple specialist teams worked tirelessly to uncover the cause of his liver issues. After two weeks of recovery, we were discharged with a multitude of medications, a feeding tube, and no clear answers about what was affecting his liver.
Not long after, we met with the Genetics Team at Sydney Children’s Hospital, who fast-tracked Julius’ results. That’s when we learned our special boy had been born with not one, but two extremely rare genetic conditions: Alagille Syndrome and Lowe Syndrome.
We knew there would be significant challenges ahead; especially as it was unclear whether anyone had ever been diagnosed with both conditions before. All we knew was that we were going to give Julius the best life we could. During Christmas and New Year’s, Julius was surrounded by love. He met many of our friends and family, who showered him with endless cuddles and affection.
After just 3 weeks at home, we were readmitted to SCH. What we hoped would be a short stay turned into five incredibly difficult weeks. During that time, we watched our brave boy endure so much. Multiple blood tests daily, countless cannulas placed in his tiny arms and legs, two nasal tubes, numerous transfusions, a complex mix of medications, and a central line insertion. He was in and out of ICU, fighting with every ounce of strength to stay with us. Despite the discomfort he faced, Julius remained the sweetest little soul and found comfort in our cuddles and even gifted us with some beautiful smiles.
Unfortunately, the liver and kidney conditions associated with his genetic syndromes were too much for his body. He left this earth surrounded by so much love as we cradled him in our arms on the 11th of February, 2025. He is the strongest person we will ever know and are so lucky to have lived a life with him in it.
Julius truly received the best care at SCH, Randwick. We are forever grateful to all the teams who worked tirelessly to care for him and gave us the most precious gift. Time with our beautiful baby. From daily updates, friendly chats, warm embraces, and thoughtful offers to help make our stay as comfortable as possible. The love and compassion they showed us during Julius’ final days is something we will carry in our hearts forever.
In memory of Julius and to honour his beautiful spirit, we are both running a half marathon on the 14th of September to raise funds for Sydney Children’s Hospital in Randwick. The hospital did so much for our family, and we know these funds will help support other families facing the unimaginable — life with a child battling a life-threatening condition. Any donation, big or small, would mean so much in honour of our angel Julius Nikolasi Afeaki.
Thank you to my Supporters
$520
Anonymous
$520
Anonymous
$520
Ma Diana Nelson
While I know nothing can alleviate your loss, I do want you to know I am remembering Julius. He was a wonderful and loving soul.
$250
Max, Carlo, Frankie & Sonny
Julius, you are always in our prayers, hearts and minds. We will love you forever baby Jay 💙 “I love you and you love paw patrol and froggies” - Kuya Sonny “I love you Julius so much. Rest in peace and I promise to always read you books” - Ate Frankie
$211
Line Afeaki
We love you angel baby Julius. Forever in our hearts. Love you from Aunty and Uncle and your cozzies
$211
Karren & Dylan Xavier
Always here for you Fred & Kat ❤️🫰🏽
$200
Jasmine Tobiah
Truly admire the strength you both have. Your beautiful boy will be with you every step of the way 🩵
$158.25
Cass Phu
You and Freddy are the strongest people I know xx
$158.25
Anonymous
$158.25
Santiago And Lizza Quinon
Stay strong! The clan will always be behind you on this difficult time. Prayers to both of you for healing🙏 love you both💕
$158.25
Anonymous
$154.65
Gayle Ramajo
An amazing way to remember Julius and support the SCH xx Best of luck with the run guys - you’ll smash it no doubt with bubba Julius looking over you guys and cheering you on from above after every Km! <3 xx
$150
Anonymous
$106.12
Anonymous
$106.12
Viv & Neha
You are always in our thoughts and prayers. Sending you all the love and strength for your run.
$106.12
Sarah Fisher
Sending love and strength always and forever x
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Angelin N
🩷♥️
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Blake Rosenberg
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Llewellyn Horgan
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Kat & Sid
🤍🤍🤍
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Rosa D & Peter T
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Mikayla Valdez
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Anonymous
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Rhe R
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Aj
I wish you love and and pray for you tita and Tito. I will always be here for both of you and will continue to support you guys in any way that I can. Love you two, god bless.
$106.12
Debbie And Larry
I am Llew's mum. Larry and I were so lucky to meet little Julius at your beautiful family Christmas gathering. I sat with your dad - such a loving grandpa - while he held him in his arms. So much love was around him. Xxxx
$104.92
Harry Coker
Good luck to you both, such a great cause ❤️
$100
B + K
Love you guys and baby J.
$100
Gabrielle Puskas
What incredible parents you both are. May God bless you always and your little angel 🤍
$100
Florence & Shannon
God bless you both Kat & Freddie! Baby Julius would be so proud xx
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Natalie And Giuseppe Zappia
The most precious little angel baby. He would be so proud of the strength you have both shown. May Julius rest in peace and forever live in our hearts.
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Roxana Boufrancis
$100
Maria Nguyen
Truly amazed by your strength, Kat & Freddy! Angel Julius will forever be in our hearts and this is such a special way to honour his memory and the SCH. Proud of you guys and know you’ll always have him by your side! ❤️
$54.12
Anonymous
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Ashleigh Scocco
What a beautiful way for you to honour Julius’ legacy Kath. Thoughts and prayers with you ❤️
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Veronica H
Go Katherine & Freddy! For little angel Julius 💙🩵
$54.12
Alana Barnes
May his strength and resilience guide and support you through your life and whatever comes next.
$54.12
Brooke Hadfield
In honour of you, baby Julius. Cheering your parents on as they carry you with them every step. X
$54.12
Anonymous
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Seeta Frahm-jensen
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Holly Mihalis
A beautiful cause. Sending love x
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Zoeie Redman
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Rami&nicole Saad
Sending sooo much love from our family to yours. Julius would be so proud of what you guys are doing. I know your little angel is smiling down from above, till you meet again ❤️
$54.12
Pip Richards
Thank you for sharing ❤️ What a great cause!
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Hass
$54.12
Kylie Coskerie
I'm so sorry for your loss but what a beautiful way to celebrate Julius' life. All the best for the run. 💙
$54.12
Kaitlyn Marriott
What an incredibly strong and beautiful family you are. Thank you for sharing your story ❤️
$54.12
Nicole Robinson
Julius will be with you every step of the way♥️
$54.12
Emilija Ristevska
Katherine and Fred, you’re both such strong people sharing Julius’ story.
$54.12
Brittany Short
For beautiful Julius x
$54.12
Patricia Marriott
$54.12
Bruce Tran
$54.12
Sandi
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Tracey & Don Wilson
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Joslin Tannous
Sending you strength and love . May your angel Julius rest in love 🤍
$54.12
Kylie Mitchell
Yours and Fred’s strength is amazing, you can clearly see the love bursting out of every picture, my heart breaks for what you have had to deal with. Good luck to you both on this challenge, I wish you all the best.
$50
Vanessa Care
Goodluck with the marathon! A wonderful cause 🤍
$50
Jemilla
You are so strong Katherine. Thinking of you, your family and Julius.
$50
Sam Pearse
Such a beautiful boy 💙they are an amazing charity and i hope you guys smash the half marathon!
$50
Michele Bond
"Losing your first baby is something no mother should ever have to go through. You are such a strong mother, and I know you would have done everything for your precious baby boy." Xxxx
$33.15
Anonymous
$33.15
Pj, Mikey & Carmen
❤️🩶❤️
$27.81
Vanessa Kojic
God Bless!! Love, Tay, Xavi, Lennox and Vanessa
$27.81
Karen Le
$22.58
Anonymous
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Anonymous
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Arlyta Andrew
Your family and you are so strong, your story is incredible. Thank you for sharing it.
$22.58
Alexis Nooyen
No mumma should endure the loss of a child. In every photo I can see so much love. Sending love to you all. You are raising funds for such a great cause.
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Cathy Warn
They always find strengthen each other💕💕
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Anonymous
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Tahia M
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Jaime Gonzaga
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Amelia Reutens
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Anonymous
Sending lots of love and hugs.
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Anonymous
$20
Emma Thurgood
$11.65
Uriel
$11.65
