‘I have to put a TUBE into a HOLE in my neck just so I can breathe.’

Alii hopes to raise awareness for those suffering with the syndrome…
Alii takes a selfie as her tracheostomy can be seen on her throat
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A woman has shared how she deals with a rare illness which left her unable to breathe on her own – by inserting a tube into her neck.

Alii Robinson, 31, from Basingstoke, was born with a rare birth defect known as Pierre Robin Syndrome, which results in an underdeveloped jaw and an obstructed airway.

At only five weeks old, she underwent surgery to have a tracheostomy placed, a breathing tube which is fitted through an opening in the trachea.

Alii as a baby with a tube from her nose
At only five weeks old, she had her first tube placed (Picture: Jam Press)

Since birth, she’s had to change the tube every two weeks which involves an hour-long process of cutting the tapes, taking out the old tube and inserting a new one.

While she doesn’t let her condition stop her from leading a “normal” life, the 31-year-old says that she suffers from a range of issues, such as headaches, swelling and a lack of confidence.

“I try to come across really happy and bouncy, but realistically, I have a lot of self confidence issues,” Alii told Jam Press.

“I don’t like the way I look or how the trachy makes so much noise and that my jawline isn’t what I would like to be.

“I have daily struggles and in more recent years, my health has seemed to deteriorate which has had an impact on my day-to-day life.

Alii’s tube switching process has been viewed millions of times (Picture: Jam Press)

“I get out of breath very quickly [while walking] and I get tired, have a lot of pain and regularly [suffer with] headaches, backaches and stoma sores.

“I also have issues with my palate, as I had to have my cleft palate repaired and at the moment, I have a small hole at the back where sometimes food gets stuck.

“This can go down my airway, which can cause aspiration infections.”

In 2009, medics tried to remove the breathing tube, as it was believed that she no longer needed this following surgery which brought her lower and upper jaw forward.

Alli with a swollen jaw after surgery while lying in a hospital bed
In 2009, she suffered from carbon dioxide toxicity after having the tube removed (Picture: Jam Press)

However, three months later, she was diagnosed with carbon dioxide toxicity and had to have the tube reinserted immediately.

Now, she hopes to raise awareness for her condition by showing her bi-weekly routine on TikTok.

In a clip, which has received 4.1 million views and over 275,000 likes, Alii demonstrates the process of upsizing her breathing tubes.

After showing the difference between the two sizes, she continues to cut off her old tracheostomy, before removing this entirely.

Alii pops the new tube into her stoma, a hole in her throat, as she winces in pain.

While she comments that the process isn’t usually painful, upsizing hurts a lot.

As the tube is finally inserted, she cheers and ends with placing the new tapes.

Alii added: “I did the video to add to my blog about the tube changes and my more recent issue with carbon dioxide toxicity.

Alii shows the two size tubes while her hair is up in a bun
While the process isn’t usually painful, upsizing is which she has to do every two weeks (Picture: Jam Press)

“I never thought people would be this interested.

“After the upsizing, it’s just a matter of time to let the swelling go down.

“Most people are shocked because they can’t tell [I have one] as it looks like a choker.

“I prefer people to ask questions though, than to stare at it. “