Girl with one in a million condition will walk for first time after securing miracle treatment in America
A tiny Norwich three-year-old with a giant supply of courage is set to walk for the first time.
Victoria Komada will be flown to Florida next month for special treatment to save one of her legs and provide a prosthetic leg to replace the other.
The news follows a two-year battle to raise money for the operations after UK doctors recommended a double amputation.
Parents Darius Komada and Marzena Drusewicz wept tears of joy as they got the news and are preparing to spend months in the Sunshine State while Victoria goes through her operations and physiotherapy.
She was born with bilateral tibial hemililia - an extremely rare condition in which both legs are misshapen and missing vital bones. After hearing of a doctor in Florida who could cure their only child, Victoria’s parents fought to raise £300,000 to save both her legs.
They have fallen short of their target, but Dr Dror Paley of the Paley Institute has accepted an offer of more than £180,000 to reconstruct her left leg.
“He was the one person who could help my daughter, and all he asked was how much we had,” said Mr Komada, 40. “He said we can do the treatment. That was one of the best days of my life, after her being born. I even started to cry.”
The first operation is booked for July 24, and the family will fly out to West Palm Beach in Florida a week earlier.
The toddler will lose her right leg, which will be amputated as reconstruction would be too costly and painful.
Mr Komada said: “A prosthetic leg is much better because it will allow her to walk around and be a normal person. There will also be no pain for her. We have tried to do what is best for her. She knows she is going to have her leg cut away and she is going to get a nice new pink leg.”
Victoria will have her tibia lengthened and foot straightened before having a frame fitted.
Mr Komada added: “When we come back home there will be a screw in her leg which we will have to tighten a little every day.”
Ms Drusewicz, 30, said: “She keeps saying she wants to go to school but she can’t because she doesn’t have shoes. She tries to do everything like the other kids and she cries when she can’t. When she can walk, she will. She is strong.”
Norwich donors raised around £40,000 and Mr Komada said: “Thank you is not enough. It is amazing what people have done for my daughter. Every penny has helped.”
Outpouring of support
Tibial hemimelia is a congenital deformity in which the legs are shortened with knee and ankle deformities.
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.