The story behind our purpose “make a positive difference in people’s life’s through texture Modified Food Solutions”.
Life has a wonderful way of throwing us challenges. Our challenge came in the year 2000, it was a big one and it changed our lives forever.
Our little princess (Aged 7 at the time) was showing signs of being physically unsteady, she would occasionally fall off her chair while seated, bump into things while walking and slow down from her frantic running around. The school asked us to take her in to see a Neurologist. We had seen a few specialists with futile results in the prior year and decided to relocate back to Melbourne from Brisbane. In Melbourne, we got an appointment with a paediatric neurologist at Monash who diagnosed that our little baby was possibly being affected by a genetic disorder, the tests proved him right. That fateful day in Nov of 2000 was a turning point in our collective lives. Our beautiful girl Stephanie-Ann (Stephie) was diagnosed with a genetic disorder called A-T (Ataxia Telangiectasia). A-T a rare, neurodegenerative, autosomal recessive disease, causing severe disability that will prematurely end up taking her life. What the! How! Seriously! Our minds were racing over that first year post-diagnosis, our lives were irreversibly changed, how do we cope with the cards being dealt to us? We were in disbelief, in despair, in denial and experienced the daily swings of being distraught, angry, and privately emotional. It took us twelve months to get to a state of acceptance and positive action in searching for a cure.
Stephie, deteriorated rapidly and in 18 months she had shifted from running around like a normal child to needing a wheelchair. She lost weight, had little energy, was needing to be propped up in her wheelchair and was finding it hard to consume normal food (we had read about dysphagia but did not know how to handle it). In 2004, we took Stephie to see an A-T specialist in John Hopkins, Baltimore who changed our minds on the nutritional needs for our child vs seeing her perish. We returned to Melbourne and arranged to install a PEG (Percutaneous endoscopic gastrostomy Tube) that gave her the daily nutrition needs she required. Stephie, was strong willed and intellectually smart and with the help of an aide completed her studies. Despite her dysphagia, she had taste buds that yearned for flavoursome food. To satisfy her taste pangs, we would texture modify her favourite food at home into bite size soft bits at first and later into a Puree knowing that she was getting her daily nutrition intake through her PEG. It was a balancing act as Stephie was developing scoliosis (curvature of the spine) that condensed the capacity of her lungs and stomach – the challenge for us was to ensure that no food ended up in her lungs as most kids with A-T acquired serious lung conditions that invariably cuts short their lives. As Stephie grew up, the art of feeding became more important, a volume of food that would take a normal person two minutes to consume would take her an hour. There was little on offer in the market for texture C foods, there were too few consumers that required such texture modification (except for baby food), we felt that the opportunity to start a business that focusses on “texture modification” as its core competence was needed. The decision was made to do just this and with our co-founders (Nick and Marky) we started on the journey of Ezy Chef in 2008.
On-Line retail offers under the EZY FOODS brand is dedicated to the legacy of Stephie. Stephie, lost her battle with A-T on the 01st Oct 2018, she was just shy of her 25th Birthday and her resilience and strength in mind and body gave her several years life more than what was predicted. Our journey together is a poignant reflection of Stephie’s legacy and fulfilling Ezy Foods purpose of “making a positive difference in people’s lives through Texture Modified Food Solutions” helps us keep Stephie’s memory etched in our souls.
Gav & Andie www.stephieschoice.com.au