Baby who received £50,000 life-saving treatment progressing well, says father
Ten-month-old Sean, who has rare muscle-wasting disease, can play with toys
Published:
A BABY who received a life-saving treatment not previously sanctioned in Scotland is progressing well and should be back in Aberdeen soon.
Ten-month-old Sean Tye, of Balmedie, Aberdeenshire, was diagnosed with the rare muscle-wasting disease Pompe, in February, which left him critically ill in the intensive care unit of Glasgow’s Yorkhill Hospital.
But as his condition deteriorated by the minute, doctors had to battle with hospital administrators for permission to administer a £50,000 enzyme replacement therapy (ERT) treatment. ERT drug Myozyme is not supported by the Scottish Medicines Consortium, and decisions on whether to treat patients in Scotland are taken on a case-by-case basis by special panels. It is understood hospital administrators were reluctant to sanction the treatment, which NHS Grampian had already agreed to fund, for fear of setting a precedent.
But after being told of his plight by the Press and Journal, First Minister Alex Salmond intervened to ask hospital chiefs to hold the hearing as soon as possible.
Just two days later, baby Sean was given his first dose of the life-saving drug.
Sean’s father, Ching Shen Tye, 31, of Chapelwell Park, Balmedie, said the past few weeks had been a “roller coaster” for him and his wife, Yafan Zhao, 32.
The drug arrested the wastage of muscles but significant damage had already occurred, which has left Sean with ongoing breathing problems. Mr Tye, also known as Sam, said Sean has since had a tracheotomy and is expected to be on a ventilator for a long time. But aside from that, Mr Tye said he was doing well and was expected to be transferred to the Royal Aberdeen Children’s Hospital in two to three weeks. He added: “He is very alert, bright, interactive and happy. And he has been making progresses in his movement. He can lift up both his arms and play with toys using his hands. There is nothing better than seeing him improving every day and we are so pleased.” He said they are now hopeful Sean will continue to make progress.
