Sister of TikTok star with rare disorder launches fundraiser to bring him home for one last Christmas

By Aakanksha Surve

The sister of a popular TikTok star with a life-threatening condition has launched a fundraiser so he can spend his last Christmas at home with his family.

Anthony Iannucci, 14, was born with Hallermann-Streiff Syndrome - a rare genetic condition that affects growth, cranial development, hair growth, and dental development.

The Sallynoggin teen is the only person in Ireland to be diagnosed with the disorder.

Anthony's sister Leanne said she hopes to raise enough money to pay for his end of life care.

She told Dublin Live: "What Hallermann-Streiff Syndrome is, is when you’re born, your features are not fully developed and it causes respiratory issues.

"In Anthony’s case, his lungs have stopped growing so he’s really deteriorating now and with the infection in his lungs, there is no more they could do for him.

"So we’re just trying to create an end of life plan at the moment."

Anthony was only two years old when he first had to get a trache put in and he's been in and out of the hospital since then.

Leanne, 30, said: "Just before Covid, he went in to get another trache put in and then another surgery but then when he got the trache in he started deteriorating and they couldn’t operate on him.

"Then he got a couple of infections in his lungs."

Anthony has since been in Temple Street Children's Hospital full time on a ventilator and needs 15 litres of oxygen a day.

However, Leanne said the doctors are amazed that he's still here.

She added: "My mum is on her own. My dad died when Anthony was a baby. So she’s had to give up work and she’s in the hospital because she has to look after him a lot."

Leanne said she hopes the fundraiser will raise enough money to hire a private carer to bring Anthony back home so he can spend his last days with the family.

"I set up the GoFundMe page in July 2020 to get him home and since then we’ve only raised €20,000. That has all gone into the house.

"There were a lot of requirements that went into the house. We couldn’t have gas, we had to change all that over. We had to get all new stuff in his bedroom. We had to change the house around for him.

"We’re just trying to get him home and raise as much money as we can to get a private carer to help my mum."

She said the situation has been particularly hard on their 16-year-old sister Sandrina who grew up with Anthony and is "best friends" with him.

Known for his upbeat personality and his signature "Hey guys!" at the start of his videos, Anthony has amassed nearly 100,000 followers on his TikTok account @anthony_iannucci.

Speaking about her beloved brother, Leanne said: "He’s a great character. He doesn’t generally accept how sick he is. But this week he did realise that he's going to die.

"He’s kind of losing his little personality a little bit. It’s very hard on him. He has such a big heart. He’s worried about my mum, he’s worried about me, he’s worried about Sandrina.

"He’s really one of a kind, and I honestly believe that his character has kept him going for so long."

You can donate here to support Anthony and his family.

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