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Liverpool Echo
Liverpool Echo
National
Aaliyah Rugg

Mum's 'constant battle' on days out due to son's hidden condition

The mum of a toddler who cannot swallow anything - even water - is urging restaurants to be more inclusive following a "constant battle".

Two-year-old Thomas Jones began to experience great difficulty feeding and swallowing at just eight weeks old and started to lose weight.

When his parents, Richard Jones and Stacey Bridge-Tucker took him to Alder Hey Children's Hospital, they found the youngster to be 'unsafe swallowing', meaning even the softest of food posed a danger to him.

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When he was 10-weeks-old, a feeding tube was introduced to help Thomas get the nutrients he needed.

Back in February 2020, everything was "going straight into his tummy" but Thomas was still trying foods due to ongoing tests.

Mum Stacey, from Walton, told the ECHO : "A lot of appointments were behind because of covid, but when he had a swallow test he was found to be unsafe swallowing. So even the softest of foods would get stuck, which was dangerous.

"Back then, we didn't know what was going on, we were thinking the worst, he was poked and prodded and had so many tests, it was a scary time for us.

"His main issue was when he'd have a bottle to drink half of it would spill out of his mouth."

Thomas is completely nil by mouth, meaning everything has to go through the feeding tube, including water and medication, and his food has to be completely blended.

Stacey continued: "It's really awkward and difficult when going to restaurants because we need to carry all of this stuff. Some places are ok with us bringing his own food in but can't accommodate blending it up as they don't have the equipment.

"I'm not here to name and shame, my partner is a chef and even he said it's shocking the amount of kitchens not willing to accommodate.

"If I was lactose intolerant they would offer me alternatives so why not this?

"It's not just my son in Merseyside that has a feeding tube. I'm doing this not only for Thomas but for all of the children and parents living with the same thing."

Thomas Jones is completely nil by mouth (Stacey Bridge-Tucker)

Stacey said it can often be an "added stress" having to prepare Thomas' food before they can go on a day out to avoid being turned away.

She said: "We are used to it now, it's second nature for us so before we leave we sort out what Thomas will have for his lunch.

"If we go out to eat somewhere I will usually ring up the place first and if they can't accommodate we won't go.

"I just want to raise more awareness that feeding tubes need to be accommodated. A couple of places in Liverpool have said they are happy to help if we call up first but why can't all places?

"If we go out in the morning we will make food for Thomas' dinner, he usually eats every three hours, but by late afternoon we are having to rush home to make sure he can get his tea.

"We can't just go somewhere and choose a place to eat."

Stacey continued: "I'm not here to blast the hospitality industry, they have had a rough couple of years, but it would be good if they accommodated for this.

"Thomas is amazing, he's thriving brilliantly. "

Stacey said she hopes this Tube Feeding Awareness Week - from February 7-12 - it would encourage venues to be more inclusive.

More information about tube feeding awareness week can be found online by clicking here.

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