Facing a diagnosis of “cancer” the trauma of diagnosis, and a schedule of invasive treatment is challenging for anyone let alone a child. Care during treatment can be invasive, painful and complicated by the clothing one wears. The Supertee is an access garment that allows the young person to be treated without disturbance. Providing greater rest, reducing stress for carer and child and delivers an emotional confidence boost.
Inspired by the story of Aloisi family, and of Supertee designer Jason Sotiris (www.supertee.com.au), Rotarian Brian Wybrow was motivated to make a difference.
Partnerships are the key to achieving dreams, the Adelaide Womens and Children's Hospital had heard of the Supertees and commenced testing it to ensure it met the criteria for a hospital garment but were looking to partner with a philanthropic organisation to fund the garments. Monday 2 September, the Rotary Club delivered the first 50 garments to the Adelaide Women's & Children's Hospital Foundation and with the support of the Hospital's Play Therapists introduced the Supertees to 2 young patients.
The Club has a 12 month goal to supply 300 Supertees and thereon - continue to meet the demand identified by the hospital for children attending the oncology and other wards within the hospital.
The Aloisi Family - Cameron's Journey
My name is Rebecca and I’m a proud single mother of 3 beautiful children. One day inSeptember 2015 Cameron woke up with partial facial swelling and feeling lethargic. I took him to the doctor and we tried antibioticsfor the week with the doctor thinking it was just a infection. After that week it had not improved and seemed to be getting worse so I took him back and they suggested getting further test’s so we attend Flinders Hospital. They did testing and noticed his white cell count was unusually high and said it would require more specialist care so we were transferred to the Women’s & Children’s Hospital and on September 11th when Cameron was 9 years old we were told he had high risk Acute Lymphoblastic Leukaemia & Neurofibromatosis 1. We were told we could have 2 days of family time before we would start Chemotherapy.
Cameron had already deteriorated quickly to the point he was unable to walk and required me to carry him everywhere including
the toilet. We returned to the hospital and the fighting began with Cameron having surgery and his port put in ready to administer the Chemo drugs. For a year our daily home was the hospital we were either in for Chemo, Long stays, Because of fevers or other complications. He at one stage suffered an allergic reaction to Pegaspargase and ended up with extremely painful Pancreatitis and also a full body rash reaction to Tazocin.
Unfortunately after 6 months he had begun to show the same symptoms as the first time and I knew in my heart before the doctors actually confirmed it that it had relapsed. We continued on with another year of hospital life after Cameron had his surgery to insert his central line but still enjoying the fact that despite the hard days we were fortunate to still be together. We laughed, enjoyed & kept ourselves occupied with the help of the play therapist as much as possible. After the year of Chemo was up we hadn’t got the results we wanted and got to meet the most gorgeous people that you never want to but know you’ll need - the palliative care team. Our doctor then gave us the option of trying a couple treatments considered experimental at that stage to which I agreed without hesitation despite the risks as I wasn’t going to give up without trying everything we could. The first one after 3 months didn’t work but the second one after 3 months got us to the stage that they were happy to do a bone marrow transplant. We all got tested to see if we were a match and fortunately one of us was. His younger brother who was his best buddy was and he wanted to donate. So off we went to Sydney’s Westmead Children’s Hospital for 6 months for transplant.
Whilst there at the hospital pharmacy I noticed they had Super Tees for sale and knowing how much Cameron loved Super Heroes I
knew it was something that would bring a smile to his face and after reading up on it more and using it I knew it was so much more then just a Tee. It proved a huge source of strength & happiness for Cameron. It was a source of independence for us as I wasn’t having to press the nurses bell for tubes & lines disconnection so often just to be able to change his top. I was able to take his temperature without bothering him too much either. Seeing him feeling stronger and happier despite what he was going thru gave me a sense of relief too as a parent’s biggest stress is watching their child go thru something so hard. All round it was just amazing and I couldn’t believe that we didn’t have something so crucial at the Women’s & Children’s Hospital in Adelaide. In my opinion all kids fighting a serious illness or injury should have access to these Super Tee’s . I was determined that one way or another I would help make it happen for the kids back home (I’m not a runner but was willing to do a marathon if that’s what it took). So I contacted the maker Jason Sotiris and asked how I could go about it. He suggested I chat with Brian from the Mobilong Rotary Club and see if we could work something out. I got in touch with Brian and organised to meet up with him and a few other members to chat about it. Me and my beautiful kids told them our story of childhood cancer hospital life & what the Super Tee meant to us. They had empathy and agreed it was a very worthy cause to support and help make happen. I had already spoken to the hospital
foundation, doctors, nurses & other patients who equally saw the value in it also. So together with the Mobilong Rotary Club, The Women’s & Children’s Hospital Foundation & my family partnership we were able to turn all our experience into something positive for the kids fighting big battles. With expenses being very tight during hospital life due to medications, car parking, petrol & food etc on top of normal bills & expenses it’s hard for parents to afford to purchase one despite very much wanting to.
My dream / goal is for kids to continue to receive them in hospital via our fundraising efforts.
Rotarian Brian Wybrow connecting with a former work mate via linked In was told the Supertee story, he connected with developer/designer Jason Sotiris -Supertee ⚡️ www.supertee.com.au and came back o the Rotary Club convinced that together in partnership with Bec, Jason and the Women's and Children's Hospital through its Foundation, we could make a difference. Along the way the project team learnt more about the garment, the inspirational work of its founder Jason Sotiris and the generosity of those who donate their time, skills and knowledge to deliver each garment.
you too can make a difference by donating the cost of a Supertee
donate here
