A Masterton family are battling to give their six-year-old son the chance of a happy, healthy life in the face of an extremely rare sensory disorder he suffers from – one that means he has never been able to eat food.
Mitchell Ryan has a very rare neurological disorder called Avoidant/Restrictive Food Intake Disorder [ARFID].
ARFID means Mitchell, who is also autistic and non-verbal, completely refuses to eat food due to a negative psychological reaction.
The condition is so rare, it was only introduced as a diagnosis in New Zealand in 2013.
Due to ARFID, Mitchell will only drink Pediasure, a nutritional liquid supplement for children, from a specific type of bottle and straw.
His father, Andrew Ryan, said the refusal to eat isn’t just an extreme example of ‘picky eating’.
“It’s not a conscious effort, it’s something inside him.”
Ryan and his wife live in fear that Mitchell will start refusing Pediasure, or that something else will knock their routine off balance.
“If something happened and they stopped making those bottles, we don’t have another step,” said Ryan.
“We’re in this fragile situation, and it’s teetering on a knife’s edge.”
Ryan said all the attempts they have made to coax Mitchell to try and eat been unsuccessful.
“He won’t eat anything, he won’t chew anything, and he’s six years old,” said Ryan.
“He won’t eat a piece of chocolate, he won’t eat lollies. I wouldn’t even think he’d know how.”
Ryan said Mitchell requires a substantially higher degree of care then a neuro-typical child, and wears two GPS trackers as he is prone to a wander.
“The extra work is hard to explain, but every facet of our life revolves around him.”
A “sweet and gentle child”, Ryan said Mitchell is a happy kid who loves going to Solway School.
“The support the school has put around him is just amazing.
“That’s such a relief for us. We both work full time and if he didn’t enjoy school, life would be horrible.”
Ryan said he had high hopes that they could create a more normal relationship with food for Mitchell with the right professionals.
“At the moment if I put anything in front of him, he’ll swipe it off the table,” said Ryan.
“It scares him.”
The best chance for Mitchell, Ryan said, is a clinic in Graz, Austria, which offers a two-week programme for children with ARFID or other problems eating.
Ryan said the course facilitators are quite insistent that the whole family needs to be present for the programme, which makes it a costly option.
Ryan and his family have made a Givealittle page in order to crowdfund financial – but the decision to ask for help wasn’t an easy one.
“I never wanted Mitchell’s privacy to be affected, so for that reason, we’ve never done anything like this before,” said Ryan.
“But we’ve had to put that to the side and put him first.”
As of Tuesday afternoon, almost $33,000 of the $50,000 target had been raised.
“Just the fact that people care enough to try and help – that’s just blown me away, it really has,” Ryan said of donors’ generosity.
“I did not think I would be this emotionally overwhelmed,”
The Ryan family’s donation page can be found at Givealittle.co.nz, and is named Please Help Mitchell Eat.
