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WATCH: Girl with one in a million condition takes first steps after life-changing surgery

PUBLISHED: 13:38 31 December 2018 | UPDATED: 14:49 31 December 2018

Victoria Komada has taken her first steps after life-changing surgery in America. Picture: Dariusz Komada

Victoria Komada has taken her first steps after life-changing surgery in America. Picture: Dariusz Komada

Archant

It has taken three years of fund-raising, 14 hours of surgery and weeks of gruelling training.

But Victoria Komada has finally taken her first steps unaided after flying to America for pioneering treatment.

The three-year-old was born with a one in a million condition - bilateral tibial hemimelia - in which both legs are misshapen and missing vital bones.

In a battle against time, two communities in Norwich and Poland fought to raise enough money to send Vicki to the Paley Institute in Florida, where life-changing surgery was available.

The family had been facing the prospect of their daughter losing both her legs.

Surgeons in the NHS had told the family the only option was a double amputation.

But Vicki’s parents, Dariusz Komada and Marzena Drusewicz, refused to accept that, and by the summer of 2018 they had raised £180,000. It was just enough to pay for treatment on one of her legs.

Victoria Komada has taken her first steps after life-changing surgery in America. Picture: Dariusz KomadaVictoria Komada has taken her first steps after life-changing surgery in America. Picture: Dariusz Komada

The other had to be amputated as it would have been too costly, and too painful, to save it.

After arriving at the Paley Institute in July, Vicki underwent an eight hour operation which included amputating her right leg.

A fixator was fitted to her left leg, with a special strut which is being turned a few millimetres each day to straighten her foot.

Mr Komada said it had been “hard to come to terms” with the amputation, after which Vicki was in recovery for four days and on painkillers for a week.

“After this time, the situation improved significantly, and Victoria again returned to smile,” said Mr Komada.

He added after the operation Vicki was “afraid of everything”, but the pain and worry turned to tears of joy when the prosthetic leg was finally fitted.

Victoria Komada. Picture: Komada familyVictoria Komada. Picture: Komada family

“About seven or eight weeks after surgery we waited for Victoria’s prosthesis,” added Mr Komada. “Finally the call came from the prosthetic centre telling us it was ready and we could bring Vicki to try on her new leg.

“When we saw her standing, admittedly with bars and fixator on the second leg, it was for us one of the happiest moments in our lives.

“We knew that there was still a long way to go for our daughter, but we couldn’t stop the tears - this was the moment she could stand.”

Since that moment Vicki has gone from strength to strength.

“After really intensive physical therapy and learning how to walk with the help of a walker, she was doing great,” said Mr Komada. “Physical therapy gave great results, and Vicki was doing something more and more courageous, she began to walk better and more confidently.

“One day she even did a few steps alone, which, as the therapist said, was really something unbelievable and she had not seen before - that someone with a fixator and prosthesis would start walking without the help of others or a walker.

Victoria Komada has taken her first steps after life-changing surgery in America. Picture: Dariusz KomadaVictoria Komada has taken her first steps after life-changing surgery in America. Picture: Dariusz Komada

“That was the best day in my life - Vicki starting to walk, that was a few steps but the first steps in her life.”

By November 13 , Vicki was ready for her second surgery, lasting around six hours, to fuse her tibia and fibula bones and fit a smaller fixator to her leg.

That will remain in place for another three months, after which she will wear a cast for one month.

Mr Komada said: “This time, Victoria endured it very well and just two days after the surgery we were back home. Two days later Vicki began to walk again with a walker, and three weeks later without any help.

“Now her walker is in the wardrobe- she doesn’t want to use it any more.”

Six weeks after her last surgery Vicki is stronger and walking more - even completing a 5k walk - and after Christmas she began physical therapy to teach her how to walk correctly.

Victoria Komada at the Paley Institute in Florida. Picture: Komada familyVictoria Komada at the Paley Institute in Florida. Picture: Komada family

“A week ago she received a second new prosthesis with a bent knee,” said Mr Komada.

“Victoria really makes great progress, we are very happy about it. Although we know that there is still a lot to do, we are sure that now it will only get better.”

What is tibial hemimelia?

Tibial hemimelia is a congenital deformity in which the legs are shortened with knee and ankle deformities.

Victoria Komada with mum Marzena Drusewicz and dad Darius Komada. Picture: Dominic GilbertVictoria Komada with mum Marzena Drusewicz and dad Darius Komada. Picture: Dominic Gilbert

There is also usually instability of these joints due to a lack of collateral ligaments. The patella and quadriceps muscles may be present or absent, but will have limited function if present.

Tibial hemimelia is extremely rare, occurring in only one out of one million live births.

Victoria Komada was born with bilateral tibial hemimelia, as both her legs are affected by the condition.

From nuns to masonic lodges, the community has united to support her, with an incredible sum of money raised for her surgery.

Her story gained national attention after a collection tin at her aunt and uncle’s shop in north Norwich was stolen.

Less than £300 was taken but the outpouring of support since has boosted their funds by more than £180,000.

Victoria Komada has taken her first steps after life-changing surgery in America. Picture: Dariusz KomadaVictoria Komada has taken her first steps after life-changing surgery in America. Picture: Dariusz Komada

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