The family of a north-east teenager who is unable to walk, eat or even breathe unaided say they are holding out for a medical miracle.
Elysha Robertson from Fraserburgh suffers from Brown-Vialetto-Van Laere syndrome and is currently being treated at Sheffield Children’s Hospital.
The rare condition has left the 13-year-old unable to breathe without the help of a ventilator and she is only able to eat through a gastronomy tube.
Elysha’s family have made the decision to take her to Sheffield for treatment because they say NHS Grampian will not offer it.
Intravenous Immunoglobulin Therapy (IVIG) is used to treat immune system disorders and made a marked difference to Elysha’s health when she had it before.
Elysha’s mother Grace said: “Our concern is getting Elysha back to a better quality of life. She really needs a miracle and our miracle last time was in the form of Intravenous Immunoglubilin.
“We are holding on to hope as it’s all we have.
“Elysha still has her sense of humour and that fighting spirit and we will fight with her.”
Elysha was only two when she fell ill with flu-like symptoms. Weeks later, she was admitted to the Royal Aberdeen Children’s Hospital where she began to fit and stop breathing.
Her condition was initially diagnosed as a viral infection, however when the family moved to Rotherham her health took a turn for the worse.
The youngster spent almost two years in and out of intensive care in Sheffield and was left partially paralysed.
However, follow a trial of IVIG which contains antibodies collected from the plasma of donors, her condition improved and the family later returned to the north-east.
Elysha’s uncle Louis said the family were sorry they could not get the same treatment here.
“We are delighted Sheffield Children’s Hospital came to our aid and gave Elysha the care which was due to her,” he said.
“It’s terrible we have had to move to a hospital in England to get this treatment.”
An NHS Grampian spokeswoman said: “The treatment plan developed for Elysha by NHS Grampian reflected considered clinical opinion.
“We had met with the family on a number of occasions and were willing to do so again. We are sorry to hear they felt they had no alternative but to seek care elsewhere.”