Archie's Story

16 December 2022

Archie and his mum Fiona

Expected time to read: 3 minutes

With a bright and healthy little girl at home and a beautiful boy on the way, parents Fiona and Stevie couldn’t have been happier. Ready for their family of three to become four, they set off for their 28-week scan, excited to see how their baby was developing. 

“He was tracking a little bigger than expected, so we did an extra scan, and they saw something in his brain that could potentially be wrong,” explained Fiona. 

Doctors suggested a fetal MRI for further investigation, which Fiona had at 33 weeks. The results of that scan shifted the ground from underneath them.  

“That’s when they told me he was going to be born without eyes.” 

Two months later, little Archie arrived and was diagnosed with SOX2 anophthalmia syndrome, a rare disorder characterized by abnormal development of the eyes, or in Archie’s case, the complete absence of both eyes. 

Fiona soon learned that this wasn’t the only battle ahead for Archie to face, as he was later diagnosed with a hearing impairment, several brain abnormalities, silent aspiration and a severe motor delay.

Archie as a baby in hospital

Despite having everything thrown at him, proud parents, Fiona and Stevie, quickly discovered Archie was still one of the happiest, most determined little boys they had ever met. 

“A lot of people say he's got a magical aura about him. He attracts people to him, and he's just generally happy, loves to be around other people, loves life and takes on every experience and challenge life throws at him.” 

Defying all odds, Archie has thrived over the last few years, growing into an inquisitive child that loves to learn and has an incredible sense of self. 

“As much as it is tough - and it is - it’s incredible how resilient he is. To continuously get back up and keep going the way he does, he could teach people a lot of things, to be honest.” 

Over the years, Archie has had his fair share of hospital appointments, admissions and emergency scares but it was only recently that he was introduced to the Newborn and paediatric Emergency Transport Service (NETS).   

“After suffering a medical emergency at a local hospital Archie needed to be transferred by NETS. In need of urgent critical care Archie was intubated by the NETS team and quickly transferred to the Intensive Care Unit at Sydney Children’s Hospital, Randwick. The NETS team saved his life. They are the most beautiful people and incredible as well, it was just a different level of care.”

Archie taking steps in his specialized walker

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Archie showed his incredible strength and determination, and with the support of amazing medical team, therapy team and his family, he made it through. He is now learning to take a few steps supported by a specialized walker, finding his voice through his switch device even though he’s non-verbal, and preparing to start mainstream school alongside his big sister Alba.  

“We don't look at his deficits. We don't define him by his disabilities, he’s just a unique little boy with no eyes that needs a little extra help to access the world.” 

Fiona and Stevie provide round-the-clock care to Archie to ensure he can live his life to the fullest, but this can take its toll. Thankfully, they were introduced to Bear Cottage, the only children’s hospice in NSW, where they have been able to receive the respite and support they need. 

For the family of four, Bear Cottage has been an oasis, a place where dreams come true and precious memories are made. 

“To be able to come to Bear Cottage when we are going through a tough time and know we can just be a family, be his parents, not his carers – it’s invaluable.”

Archie and his sister swimming in a pool

“Our family also lives in the UK, and unfortunately, it's not safe for Archie to fly, so without Bear Cottage, we wouldn’t be able to see our family. So, it's kind of a lifeline for us knowing that he's in the very best hands.”  

Established entirely through community support back in 2001, Bear Cottage has provided support, respite and end-of-life care for countless children like Archie and their families.  

“Children like Archie require a bit more help, which does require funding, and without support from donors, he wouldn't be the person that he is today. It takes a village to bring up a child, particularly a special needs child.” 

Donate today to ensure all kids like Archie have access to the best care possible when and where they need it.

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