An Ezy innovative Aid for tube feeding
Who are we?
We are Matthew’s parents Jess and Adam. Our son was born with a rare condition that we now finally have a diagnosis for: MED-13L Syndrome. He is one of approximately 300 children with this condition in the world.
Matty’s condition required him to be tube fed for the first two years of his life to ensure he received adequate food and nutrients. At any one time, 280,000 people across Australia alone (including 80,000 children) rely on a NasoGastric or Orogastric tube for sustenance due to feeding issues associated with premature birth, cleft palate, elderly, cancer, stroke, anorexia, dementia, diabetics, cystic fibrosis, etc. There are millions of tube fed people around the world who require tube feeding.
Fitting a NG or OG tube can be distressing for the patient and their caregivers. The tape used does not secure the tube well and can cause irritation, particularly when wet.
From our experience, runny noses, sweat and bath time would wet the tape holding the tube in place irritating Matty’s skin and weakening the adhesion. Skin irritation led Matty to pull on the tube, resulting in frequent tube changes sometimes multiples times a day.
Applying the tube and taping it in place required two people, making it inconvenient for us as parents, and traumatic for Matty.
Matty developed a oral aversion to food due to the emotional distress of having hands in his face and the discomfort associated with frequent tube changes.
Our frustration at the lack of good solutions to help us care for our son drove us to design a device that can improve the lives of tube fed patients and their carers.
We are seeking donations to help complete the design and production setup, register the medical device in Australia, and run a clinical trial of the product in the Neonatal Intensive Care Unit at one of New South Wales largest hospitals.
This is a critical step in getting the product approved by the Therapeutic Goods Association. Without this approval, the product cannot go into production.
Our goal is to turn our idea into a sustainable enterprise so that EzyAid can be made available to everyone who needs it in Australia including healthcare facilities and homecare patients.
With enough support we would like to make our product available globally to improve as many lives as possible. Please share with as many family, friends and networks that you can, we appreicate your help from the bottom of our hearts. The more we can raise the quicker we can get our product to market to help those who need it as well as save hospitals time and money. Thank you
“In my role as the Clinical Nurse Consultant for the Neonatal intensive Care Unit of John Hunter Children’s Hospital, I often review new products on the market. I’ve been working with Adam and Jess for some time now with regards to the EzyAid tube fixation device, offering clinical expertise and practical ideas. It has been wonderful watching the development of the product and seeing the commitment and passion that they have for improving care for infants and children requiring long term tube placement. I wholeheartedly believe that the EzyAid has the potential to be a staple product in healthcare facilities, as well as for use in the community. I am happy to continue to support Jess and Adam as they progress this product through to market.”
Matty and his beloved dog Frankie at 10 years old today. A happy and loveable boy who loves his food and tube feeding days well behind him. He has a moderate intellectual disability and speech impairment due to MED-13L Syndrome.
Thank you so much for your support of our campaign to raise funds for our product EzyAid to help improve the lives of tube fed people. Your financial help is so greatly appreciated, especially with the rise of living costs and expenses. Its a hard time to campaign for funds and also being this time of year towards Christmas.
We had another meeting with John Hunter Hospital today regarding our next trial which will be a sustatainability trial and we also have another manufacturing meeting tomorrow with a new manufacturer. Unfortunatley the manufacturer we had found in America is unable to start on our project until half way through next year! So its been a bit of a step backwards for us and now we are on the hunt to find another manufacturer asap.
We are also trying to spread our campaign to businesses who may be interested in sponsoring the trial at the John Hunter Hospital. If you know of any businesses/ companies who may be interested in donating or sponsoring our trial please share our campaign with them.
Thank you again! Jess : )