Dialog Box

Children's Tumour Foundation of Australia

Archie's Story

Archie's Story

At just three months of age, our little Archie was diagnosed with a kidney condition. Archie had three surgeries from 12 months of age in relation to his kidney function and an ENT surgery. Little did we know at the time of these that Archie actually had NF.

Initially, Archie was reaching all of his developmental milestones in the early years but at the age of three we noticed that his speech and language acquisition was falling behind other children his age.

After hearing tests, it was evident that Archie required grommets and we were told that we should see rapid improvement. We didn't. There were other signs of concern, including cafe au lait spots, muscle weakness on one side and Archie being unsteady on his feet.  

Concerned, we took him for further medical assessments, and within an hour and a half, neurofibromatosis type one was on the list for investigation and my heart stopped.

As much as we didn't want to accept it, we were about to approach the journey of neurofibromatosis and what it involved. We knew it was likely because he started developing little light brown markings all over his skin. Soon enough it was confirmed, that Archie had a spontaneous case of NF1. 

As we were living remotely  in the small country town of Tambo when Archie was diagnosed and I had just given birth to our fourth little baby, George, I aligned Archie's complete initial NF work-up over a period of one week where we, as a family of six, lived in Ronald McDonald House on the school holidays. Archie could then have his first MRI under GA.

Archie's diagnosis caused a considerable re-assessment of our life. After speaking with the specialists and therapists, it was clear that we needed to move to be closer to high-quality services and support.

Both Tom and I are in professions that promote mobility, and we turned our attention to establishing a new life in Brisbane. We uplifted the family from remote Queensland in July and we are still working at establishing ourselves and settling our family of six into life in the city. We are grateful for the gift of time and opportunities however it has certainly presented us with challenges.

We have been blessed to have a great Kindy program for Archie. He will participate in another year of Kindy in 2024 to prioritise his NDIS goals and build confidence to be Prep ready. This is a crucial time for Archie as we work hard to provide him with the early intervention he requires as we know improving his strength and communication is essential for his well-being in building connections with his peers as he approaches the school journey.

When Archie was diagnosed, we felt very alone and weren't sure which way to turn. No one was aware of NF. Thanks to a dear friend, we were connected with the Children's Tumour Foundation who, what felt like, wrapped their arms around Archie and us as a family. So much so we dusted ourselves off and went on the awareness campaign with CTF for Steps Towards A Cure and raised around $23,000 in 2023. To see these funds placed into vital research that is driven by CTF brings optimism and hope. 

For now, Archie is currently tumour-free, but intellectually he is up to 12 months behind his peers. He also has difficulty with his mobility, renal system, hearing and experiences fatigue. It's quite scary to think that this is going to be every year. We're going to relive these tests and that month of waiting to find out results.

There's a constant unknown lingering in the back of our minds. A constant fear that day will present itself that no NF patient or family wants to walk the steps of. I look at sweet little Archie and can see his strength and determination. NF pulls him back from being that energetic four-year-old little boy he wants to be.  This is heartbreaking. We wish we could sew together chromosome number 17 and that was the magic fix. We then also feel grateful for every year Archie doesn't have to deal with tumours. 

I feel grateful for the two beautiful sisters and baby brother he has that guide him through life and give him that happiness and inner strength to conquer this journey. I find another level of gratitude in the moment.