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Vimali SamaratShannon_Josephunga writes about her son’s critical health problems that prevent him from eating and drinking, and asks for support to help fund the treatment he needs.

My son Shannon, who is two years and five months old, was born with congenital heart disease and suffered from a rare set of complications that have prevented him from eating and drinking, resulting in his being tube-fed from birth. Accompanying these complications has been intense pain, breathing difficulties and admissions to intensive care.

Unfortunately, Shannon's ordeal has left him with a condition called post-traumatic feeding disorder.

Essentially, Shannon associates eating with pain, and his aversion to eating and drinking prevents him growing and developing at the pace of regular children. As a result, Shannon is on a life-supporting feeding pump.

Shannon's battle with food aversion and various associated health issues has left him with significant developmental delays. In order for Shannon to progress off his feeding pump he needs intensive daily therapy and a tailored weaning plan from experts in this specialised field. The longer Shannon is without specialised treatment, the further behind he will fall.

I have discovered there is little expertise in this field. The world leaders in the type of treatment Shannon needs run the NoTube program at the University Children's Hospital in Graz, Austria, and families across the globe apply to join the program. Parents from Australia and New Zealand have needed to raise $70,000 for their child to become an in-patient in the highly successful program. Dr Markus Wilken from Germany, who previously worked with NoTube, now travels the world providing treatment in the child's home. We have been lucky enough to secure a slot with Dr Wilken and need to raise $17,000 for him to treat Shannon in our home.

Consistently positive testimonials from families about Dr Wilken, who treated two Australian children late last year, has reassured us he is our best option.  

We are requesting your support in the form of donations towards a fund we have set up to help bring Dr Wilken to Australia to treat Shannon. Your gift to Shannon will be the opportunity for him to eat, drink and have a normal life like his older brother.

Your kind donation can be made to the Shannon's Appeal account by direct deposit or via credit card through the donation website link below.

Shannon Joseph
Commonwealth Bank
BSB: 063 616 Account number: 10481888
https://www.mycause.com.au/page/helpshannoneat

More information on his Facebook page: http://www.facebook.com/HelpShannonEat

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Posted: 1 year, 1 month ago by www.sense-ationalmealtimes.com.au #21611
Hi Vimali. What a stressful time Shannon and your family have endured! I am wondering if it might be helpful in the interim for you to know about our SENSE-ational Mealtimes book that we launched a few weeks ago? Our website www.sense-ationalmealtimes.com.au has all the details about the book and how to order it online. Together my occupational therapy colleague and I (a dietitian) discuss the possibilities for stretching the range of food children will explore through supportive relationships and sensory preferences. Many families have told us the book is helping them with feeding difficulties, tricky mealtime behaviours and fussy/picky eating. When we wrote it we also had the very challenging experiences that your family have been through in mind.