"I had a stoma until I was one year old, I had a bladder augmentation at the age of 7 and at the same time I had a Mitrofanoff and an Ace conduit stomas formed."
Aled Griffiths was born in 2003 with VACTERL Association, a collection of birth defects which included an imperforate anus (meaning the anal opening wasn’t properly formed), a neuropathic bladder and limb abnormalities. Aled’s parent, Gaile and Neale, had no idea there would be anything unusual about their son as all their pre-natal scans looked normal. VACTERL Association is a rare condition affecting 1 in 20,000 births, with each case being completely unique.
Aled has undergone countless operations on his heart, urinary system, bowel, spine, arm and hands and now has a Mitrofanoff (to manage his urine) and an ACE conduit stoma (to manage his bowel function). In every other respect though Aled is a completely normal 12 year old who enjoys sailing, going to Cubs and playing on his games console with his friends.
Although to say that Aled is ‘completely normal’ may actually be to do him a disservice as he is Children’s Ambassador for Mitrofanoff Support and has won awards for sharing his inspiring message of hope over adversity. “Last year I received the Rotary young citizen award as well as a Diana award for my work in help in charity work” he says, with a smile and a shrug. Aled was excited to join the Advocate team because it gives him another opportunity to “pass on my experiences and show everyone that nothing should hold you back.”
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