The parents of two boys with spinal muscular atrophy (SMA) are backing a campaign calling on the Irish government to introduce a blood test to detect the rare disorder from birth SMAIrelandCom
The parents of two boys with spinal muscular atrophy are backing a campaign for a simple but potentially life-changing blood test at birth.
"Before Luke was born, SMA was something we'd never heard of," said Liz from Mornington, County Meath, in the Republic of Ireland. A challenging aspect of treating SMA is that the diagnosis is often only made once the child has serious clinical symptoms, such as movement problems, by which point many motor nerves will have been lost.SMA is not routinely detected before or at birth in the UK or Ireland, as it is in nearly all the US, in Germany, Poland, Belgium, Australia and in some parts of Japan.
"Other countries have already introduced the test. We are saying to the Irish government to stop dilly dallying and make a move so that we can get that medicine to the children as early as possible. Just let's hurry up."
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