Five-stone teen 'needs surgery now' to relieve agony of scoliosis

Viktoria Jurekova's parents are heartbroken at seeing their beloved daughter in pain on a daily basis.

(Left to right) Jacob, Alzbeta, Viktoria and Josef Jurekov. Viktoria has been taken off the waiting list for surgery at Temple Street Children’s Hospital in Dublin.

A teenager who weighs just five stone and is in a wheelchair is making a desperate bid to raise €60,000 for life-changing scoliosis surgery after she lost her place on the operation list when she turned 18 during lockdown.

Viktoria Jurekova was on the waiting list for four years for surgery for her condition. Such is her pain that she has lost her appetite leaving her weight to decrease every month.

Her parents Josef and Alzbeta are deeply distressed as it has emerged that Viktoria has been taken off the waiting list for surgery at Temple Street Children’s Hospital in Dublin.

Josef said they cannot wait any longer for vital surgery for their daughter. They have now explored options overseas which are not covered under the Treatment Abroad Scheme. The surgery Viktoria requires is in theory available in Ireland but they say she could spend several years on the adult list.

In addition to scoliosis Viktoria, who attends school two days a week, suffers from cerebral palsy and spastic quadriplegia.

Josef, who lives in Norwood in Waterford city, admits that he and his wife are heartbroken at seeing their beloved daughter in pain on a daily basis.

“All we can do is give her steroids. If she is in pain we put her on the bed to stretch her back. There is not much we can do. They don’t even call her for physio in Waterford because they can’t help her. The curve is very big on her back.

"This child is suffering. I got a letter on the 16th of October saying she had been removed from the list but no information on who was taking her over. 

She needs surgery now. She cannot wait any longer. Her lung could collapse.

Viktoria, who is originally from Slovakia but moved to Ireland in 2007, was born prematurely with underdeveloped lungs. As a young child she had a massive grade three brain haemmorhage on the right side and grade 4 on the left.

Special motor activities and exercises became her daily routine.

Viktoria says although she could not walk she was the fastest of her peers having received an electric wheelchair.

"Everything seemed super. My father would say I was talented, a better driver than him. However, our joy did not last long. As I was sedentary and could only move in a wheelchair or be carried around in my father’s arms, my joints were not developing properly. The first joint pain arrived, and when I was 8 years old, I then had my first hip operation.

"My journey continued, albeit all downhill. When I was 10, I acquired a new diagnosis – scoliosis. Consultations with doctors about my future were and continue to be endless because of the system and the waiting time for the scoliosis operation in Ireland.

Viktoria says scoliosis has not only bent her back it has also removed oxygen capacity from her lungs, developed pressure on her heart, taken away her appetite and stolen the smile from her face.

"My parents have located doctors, masters of their craft, at the orthopaedic clinic in Brno, the Czech Republic, who are willing to restore my smile and appetite, rid me of the pain, and extend my life, but it is very costly. My parents, trying as they might, are unable to raise the funds needed, which is why I am pleading to you for help. Please help us put a smile back on my face."

The family plan to pay for all their travel accommodation and post-operation costs themselves. However, they need money for the surgery which requires to be paid upfront.

Josef is working in Dungarvan whilst his wife is a full-time carer for Viktoria. Josef has had to take considerable time off work over the years to assist in the care of his only daughter.

In addition to scoliosis Viktoria, who attends school two days a week, suffers from cerebral palsy and spastic quadriplegia.

He is desperate for Viktoria to undergo the surgery.

"We just want to give her the life that she deserves. She has been through so much."

Josef says they received a standard letter from Children’s Health Ireland (CHI) stating that Viktoria was off the waiting list for surgery at Temple Street.

They do not know which Irish hospital to approach in relation to treatment for their daughter and in despair at the years of waiting have decided to go overseas.

In a statement, CHI says it is not appropriate for them to comment as the patient is no longer under their care.

“As this patient is now under the care of another hospital your request for comment is more appropriate to that hospital.

"CHI cannot comment on individual cases. Maintaining a client’s confidentiality is not only an ethical requirement for CHI, it is also a legal requirement as defined in the General Data Protection Regulation (GDPR) along with the Data Protection Acts 1988-2018.

"When a client or family makes personal information public, this does not relieve the Hospital of its duty to preserve/uphold client confidentiality at all times."

Donations can be made to the Viktoria Jurekova find at https://www.gofundme.com/f/appeal-to-help-viktoria.