Scottish mum ‘overwhelmed’ by woman’s shocking reaction to disabled son with rare developmental condition

A Scottish mother has been “overwhelmed” by a woman’s surprising reaction to her disabled son who has a rare developmental condition.

Jemma Nisbet’s youngest son, Aaron, was diagnosed with Temple-Baraitser syndrome at 15 months.

The five-year-old is currently the only person in Scotland with the condition and only one of 16 worldwide currently recognized as having it.

After a visit to Edinburgh Zoo for her daughter’s 10th birthday, Jemma was delighted when a mother didn’t shy away from her son’s questions while feeding Aaron.

The young man, who is currently non-speaking, is fed via a feeding tube, meaning Jemma and her partner administer a combined version of their own meals, Edinburgh Live reports.

Aaron is fed through a tube.
Aaron is fed through a tube.

After a picnic at the zoo, the family had begun the feeding process when Jemma saw another mother and her young son sitting next to them.

Curious about the procedure, Jemma says that the boy had been asking his mother out loud what was going on, to which she had an “unbelievable” reaction.

Accustomed to many families in similar scenarios “staring” or “telling their children to shh,” the 38-year-old was delighted to hear the mother explain the process to her son, without embarrassment or awkwardness.

Jemma says family is often 'stared at'
Jemma says family is often ‘stared at’

Jemma said: “We tube-fed Aaron but he eats pretty much exactly what we do, he’s on a tube-fed diet but it’s just a blended version of what we’re having too.”

“It only takes us about ten minutes and for lunch it could easily be the same sandwich we just blended. But it usually takes some time while we connect the tube to his belly and stuff.”

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“Oftentimes people just look but don’t say anything, but we know they’re looking, and other times people tell their kids to ‘stop looking’.

“Young children are always curious and in this situation the mother explained that Aaron was probably just eating the same food as us from a tube.

“She was really sweet and she seemed like she knew what we were doing, which was nice. The little boy even asked ‘could I mix my Babybel up?’ which was lovely.”

“He also told him that he might not be a baby, just because he was in a pram, and told him that he was actually a big boy whose legs might not work properly.”

Reaching out to the woman online, Jemma explained that it can be difficult for people to know how to react to Aaron and his family, but she felt comforted that someone was treating them normally.

Aaron is now learning to walk.
Aaron is now learning to walk.

She said: “People normally say things in that situation like ‘shhhh’ or ‘stop looking, don’t look at the baby’, and he’s not even a baby.

“I see it from both sides, we are very open and happy that people ask us things, but I understand that there may be more reserved people.

“I think people are scared to ask and oftentimes it’s the adults, not the kids, who aren’t sure and are a bit stuck.”

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Currently living in Inverness, the family is originally from Kirkcaldy, and Jemma’s partner’s army job forces them to move across the country.

The couple had seen Aaron arrive five years ago, and doctors initially noted that he had been born without miniatures.

After being referred to Edinburgh Sick Kids and then Western General, the family was told he had the rare condition that would affect his development.

Jemma said: “He’s difficult, he doesn’t speak and he’s severely disabled, he recently learned to walk with a gate coach and he’s also globally developmentally delayed which means we don’t know how much he understands.”

“The way he communicates is usually when he cries and it’s a guessing game about what he needs.”

However, after posting on Facebook about her experience at the zoo, Jemma reached out to try and find the other mother and was stunned by the reaction.

In just 12 hours, the post had been shared and commented on by more than 1,400 people, and Edinburgh locals were able to find the woman they had met in the park.

The mum-of-two added: ‘I woke up and my phone had just exploded. We’ve exchanged a couple of messages but we’ve both been busy this morning getting our kids ready so I think we’ll catch up later properly.

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“At the time I was so bewildered and overwhelmed that I couldn’t really tell her how good she was, honestly, she was amazing.”

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George Holan

George Holan is chief editor at Plainsmen Post and has articles published in many notable publications in the last decade.

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