Enjoy the best
moments
Our Mission is to provide financial assistance to support the making of memories for Archie Johnston, who is currently battling an ultra-rare genetic condition.
This Trust has been established to raise and manage funds directed towards securing the best possible outcomes and improving the quality of life for Archie Johnston.
We’d appreciate your support in Making Memories for Archie Johnston.
You can click the button below to donate.
About Archie
Archie Johnston is the 7-year-old son of Dwayne and Chloe Johnston from Lilydale, Victoria, Australia. Archie is currently completing Grade 1 at his local Primary School. He is sports mad, his favourite teams are Richmond Tigers (AFL), Melbourne Storm (NRL), Melbourne Stars (BBL), Melbourne Phoenix (NBL), Golden State Warriors (NBA) & Minnesota Vikings (NFL). He plays basketball for the Mt Lilydale Lakers Basketball Club and in 2025 commences Under 8s in AFL for the Mooroolbark Mustangs.
Archies Background
Archie’s Medical Journey & Diagnosis
At age 5, Archie was referred to a private orthopedic surgeon due to a leg length discrepancy. He underwent full-body X-rays and additional tests, leading to a referral to the Royal Children’s Hospital genetics team. Over 18 months, Archie endured extensive testing, including blood work, saliva samples, scans, X-rays, and full genetic profiling analyzed in South Australia and the United States. After multiple initial diagnoses, he was finally diagnosed with an ultra-rare genetic disorder: Multiple Sulfatase Deficiency (MSD).
Understanding Multiple Sulfatase Deficiency (MSD)
Multiple Sulfatase Deficiency (MSD) is an ultra-rare condition, affecting about 1 in 1.5 million children, with three types that significantly reduce life expectancy to childhood years. Archie is the only reported case in the world with a unique variation, mosaic uniparental isodisomy of chromosome 3 making his regressive trajectory unpredictable. Unlike typical MSD cases inherited from both parents, Archie’s condition resulted from a spontaneous mutation in chromosome 3. MSD causes progressive cell death, leading to the loss of all functional skills over time.
Impact of MSD on Archie’s Health
MSD causes loss of essential functions, including mobility (confining Archie to a wheelchair), cognitive skills, sensory abilities, respiration (requiring breathing support), eating (reliance on feeding tubes), and nervous system function (leading to seizures). Archie has regressed in hearing, vision, mobility, and respiration, now using hearing aids, glasses, daily medication, and Ventolin. With no cure, treatment focuses on symptom management. Archie attends weekly therapies—occupational, physio, hydro, and psychology—and will soon start speech pathology, dietetics, and exercise physiology.
Living with an Ultra-Rare Condition
Due to the rarity of Archie’s MSD mutation, there is no known prognosis, treatment, or clear path forward. As a family, we are taking life day by day, cherishing every moment and focusing on creating joyful memories with our kind and loving boy. Our priority is ensuring Archie’s days are filled with happiness and laughter. We have chosen not to share the details of his condition with him to spare him unnecessary worry, and we kindly ask that this information remains confidential. His well-being and happiness are our greatest concerns.
What Archie knows
Archie is aware that he has a unique “thing” that no one else in the world has something we lovingly call his superpower, comparing him to a superhero. He understands that this “thing” inside his body affects his hearing and eyesight, and sometimes makes him feel tired and sore. We’ve explained to him that by taking time to “recharge his batteries,” he can help ease his pain and, hopefully, get back to doing the things he loves, like playing basketball or footy.
Fulfilling Archie’s Dreams
Archie’s lifelong dream is to visit the United States and experience the excitement of attending NBA, NFL, and other major American sporting events. To help make this dream a reality while he still can, a fundraiser has been planned for May 2025, and a trust has been set up to manage the funds raised. If you’d like to learn more about MSD, you can visit resources such as:
Cure MSD
National Organization for Rare Disorders
The Archie Johnston Foundation/Trust
Mission Statement
The mission of the Archie Johnston Foundation Trust is to provide financial assistance to support the making of memories for Archie Johnston and his family. Archie is currently battling an ultra-rare genetic condition, Multiple Sulfatase Deficiency. This Trust is established to manage and administer funds raised with the utmost transparency and accountability, ensuring that all contributions are directed towards securing the best possible outcomes for the beneficiaries. Whilst the primary mission of the trust is to allow the making of memories for Archie and his family, the funds raised will also aim to provide a financial safety net around the family to cover residual medical and care costs that may arise. The Trust strives to alleviate the financial burden on the Johnston family, allowing them to focus on making memories and providing love and support to Archie and each other during this challenging time.
The Trustees
No members of the Johnston/Barr families are to be an official member but representative to attend or request attendance on invite on regular occasions ex officio.
Mr John Ryan CPA, FAAA
Chair
National Business Development Mgr, JANA Investment Advisers, Former National Sales Mgr Zenith Investment Partners and Lonsec Limited. Inaugural Vice President Park Orchard Football Netball Club(POFNC), Former President Aquinas Old Collegians FC(AOCFC), Former President Ringwood Catholic Tennis Club(RCTC) Life Member both AOCFC/RCTC, Former Board Member, Aquinas College
Mrs Jan O’Brien
Trustee
Current retiree. Formerly Licensed Customs Broker with positions during a 35 year career as General Manager Rhenus International, Co-founder of O’Brien Customs & Forwarding & State Manager of Raymond Ryce Customs Agency.
My relationship with the Barr family has spanned over 20 yrs since meeting them at Holy Spirit PS and our friendship continued through our association with POJFC and it continues to endure today. My husband and I are committed to supporting Chloe, Dwayne, Archie, Harper and extended family wherever possible.
Mrs Brooke Woodworth
Trustee
Franchise Partner and Managing Director at Fernwood Fitness Waurn Ponds. Previously served as Treasurer and Vice President Lilydale North Preschool.
Brooke met Chloe and Archie at Mother’s group and has been one of Chloe’s closest friends since the day they met. Archie and Brooke’s eldest son Isaac are lifelong friends and it is Brooke’s greatest honour to serve as one of the trustees for the Archie Johnston Foundation Trust.
Mr Alex Geilings
Trustee
Partner at Rundles Chartered Accountants and former Treasurer of Park Orchards Football Netball Club. I got to know the family whilst playing alongside Dwayne and sitting on the Committee with Chloe throughout my time at POFNC. It’s an honour to play my part in making memories for Archie and his loving family.
Mr Shane Livingstone
Trustee
Shane worked in financial markets primarily as an investor on behalf of large corporate super funds. He was responsible for investment strategy, risk control, communications and ultimately, investment returns. During this period, he also managed to play 300 games for Aquinas Old Collegians Football Club and is a life member. He plays golf and, like Archie, is a member of the Tiger Army.
MSD Information
If you wish to learn more about MSD, you can visit the following websites.
Partners
We would like to extend our heartfelt gratitude to all our partners who have made Archie’s dreams a reality.
Accurate Art
Allied Credit
Balter Brewing Company
Bencar Group – Bruce Bennett
Blue Dog Café
Bombora Advice
Bowens Timber & hardware
Brent Foster A1 Framing
Commercial Club Albury
Convenience Measures Australia
Coombe Winery
Coombs Hill, Merrijig
Dennis Armfield
Eastern Region Osteopathy
Essendon Football Club
First Nations Traffic Management
Fletchers Warrandyte
Healesville Toyota
Hoskins Real Estate
Insite Consulting
Kellybrook Winery
Larsen Homes
Mark Leonard Plumbing
Marshall White – Traci Stella
Melbourne Football Club
Melbourne Storm
Mornington Racing Club
Mr Whippy Van Warrandyte
Mt Terrible Wines – Jamieson
Nicole Werner Member for Warrandyte
Parker Finance
RNG Lawyers
Rosebud Country Club
SACS Consulting
Sarah Joy Photography
Suburban Eastland
The Ayers Family
The Barn Coombs Hill Merrijig
Corner Café Park Orchards
The George Family
Variety Club Victoria
Warrandyte Hotel
Wayne Ritchie’s
WEX inc
Wild Wombat Mansfield
Yarradene Luxury Farm Stay Healesville
Contact us
For further details or to get in touch, please complete the form below, and we will respond to you promptly.