This post first appeared on Derby Telegraph. Read the original article.
A hospital trust has apologised to an Alvaston teenager after postponing a vital operation.
Krystian Wach, 13, suffers from Duchenne muscular dystrophy (DMD), a severe type of muscular disorder, and was due to have an operation in January at the Queen’s Medical Centre in Nottingham but the family was told it would have to be postponed until April or May.
Nottingham University Hospitals NHS Trust has apologised and, just a day after to Krystian's family got in touch with the Derby Telegraph about their dilemma, the trust has now come up a new operation date of February 27.
The familiy, who are originally from Poland, say that, were the operation not to take place as soon as possible, it could reduce Krystian’s life expectancy by several years.
Krystian's dad, Adam Czabanski, said the situation had put a large amount of stress on the family and he was worried whether or not his son would be strong enough for the operation.
The 41-year-old said: “I don’t know why after months of telling the hospital that Krystian needs this operation, they suddenly find a date for him.
“Normally it takes months of preparation and you get letters two months before the operation to confirm the date but, after a day, they find a space for Krystian.
“It has been hard on us as a family because I have been in conversations with a private clinic in Poland and I have to move all my work dates forward.
"How many other families has this happened to?"
Mr Czabanski and his partner, Agnieszka Wach, came to the Derby Telegraph on Thursday, January 18, to tell of their son’s dilemma after his vital operation was cancelled in January.
After the Derby Telegraph contacted Nottingham University Hospital NHS Trust for comment, the family received a call on Friday morning at 10am confirming a new date for Krystian’s operation.
Last year, doctors found that Krystian’s spine had curved over 56 degrees and this affected his breathing and general function of his internal organs.
The only option available to the family was an operation to try to straighten Krystian's spine which would help his breathing and improve the working of his heart.
The family say that Krystian missed out on things that other children took for granted like running and climbing and his condition was spotted too late.
At eight years old, Krystian was unable to walk and the family had to wait for three months for a wheelchair to arrive.
Krystian currently uses an electric wheelchair as he does not have the muscle in his arms and legs to move around and is permanently under the care of a neurologist, cardiologist, pediatrician, physiotherapist and psychologist.
Doctors in Poland said Krystian needed the operation soon as Krystian’s weak breathing would shortly render him incapable of undergoing anaesthetic.
Krystian’s mother started a fund-raiser on GoFundMe in a last ditch attempt to raise funds for a private clinic in Warsaw.
The family have said they are closing the campaign and the money raised will go to Krystian's rehabilitation after the surgery.
She said that her son had taken part in a two-year test programme in Poland at the Białystok Clinic but he had not responded to any of the medications or treatment.
The 42-year-old said in a statement on the fund-raiser: “We didn't detect the symptoms of this disease and unfortunately, Krystian’s condition was spotted too late and continued to deteriorate.
“Krystian is a very smart, resolute boy and is fully aware of his illness.
“He often asks very difficult questions, to which we try to give sincere answers such as 'how much time do I have left?'"
Simon Parsons, divisional director for surgery at Nottingham University Hospitals, said: “We apologise to Krystian and his family for the distress and inconvenience caused by the cancellation of his surgery as a result of the extreme demand on our services.
"Krystian’s operation has been re-arranged for February, 27.
“We are working hard to reschedule dates for patients whose operations we have regrettably had to cancel this month at the earliest opportunity, based on clinical need.”