Bendigo toddler with rare tibial hemimelia condition to have leg amputated

Leonardo Htoo Doe was born with tibial hemimelia - a rare birth defect which affects only one in one million babies - meaning the tibia in his right leg is partially formed.

He will have surgery to amputate his right leg below the knee at Melbourne's Royal Children's Hospital on Tuesday.

"I'm not that happy about the surgery but I'll have to be because I have to be strong for him to be strong," Leonardo's mother Ya Ruslin Kunoo said.

"The sooner we get the leg off the better because that means he gets to enjoy his childhood more."

Tibial Hemimelia can have varying symptoms but ultimately means a baby is born with a partially or completely missing tibia or shin bone.

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Those with the birth defect may also have issues with their knee, like missing ligaments, or other issues like foot and ankle deformities.

Leonardo's condition means he cannot stand up or walk properly, Ms Kunoo, 17, said.

"He started crawling around at seven months so we already knew that he was going to be a really active baby," she said. "We can see it is holding him back and we don't want to do that to him."

Tibial hemimelia is most commonly treated with amputation, although there is an alternative surgery in the United States where the bones of the legs are realigned.

The option was not viable for Leonardo, Ms Kunoo said.

"Leo is very loud and he is very active and he has anger management issues," she said. "So that is harder for me because even if I want to fix it, he'd want to walk on it straight away.

"When I went to the specialist I also saw two boys - one of them had the amputation and the other one did not.

"It saddened me because the one who had both legs was having trouble walking and the one that had the amputation was walking around freely with his mum.

"That's when I thought maybe we should just amputate it."

Ms Kunoo said Leonardo had the support of her family, his father, and Bendigo's Karen community.

"We have so much family rooting for us," Ms Kunoo said. "On the father's side of the family, there are six or seven uncles and two aunties and my family is still pretty big."

"So even our cousins and our relatives, they are all supportive, they all call him their baby. So we have all the support we need which is really good."

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The amputation was not a cheap exercise but Ms Kunoo, who is still studying, said she was receiving financial help from family.

"A family friend is helping us with the cost of the surgery but we have back up money if we need it," she said.

"And the people in our church have set up a GoFundMe page for us and we have now around $1000 which will last for travelling fees and accommodation."

Ms Kunoo said she was telling her son's story to raise awareness for the rare condition.

"I just want my son to grow up knowing that he has people supporting him," she said. "I don't want him to feel bad for looking different because being different is not a bad thing.

"I know he has the community of Bendigo. I have grown up in Bendigo. I was one of the first few Karen families here and the whole of Bendigo all took care of us.

"They gave us a new home and life here. So I want him to be himself because Bendigo will take care of him."

Ms Kunoo said anyone who was interested in supporting Leonardo could do so at gofundme.com/f/leonardos-tibial-hemimelia-operation

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