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A PROGRAMME HAS been approved at Temple Street to treat a rare condition, which could save the lives of two baby girls Nellie and Lara.
“Last night we got a call,” Stephen Lannen, father of Nellie, told The Ray D’Arcy Show today. “Temple Street has approved the compassionate youth programme, so we’re going to get in there in the next couple of weeks thank God. We’re flabbergasted.”
22-month-old Nellie and five-month-old Lara are the only two infants in the country with the genetic degenerative condition that makes it difficult for them to crawl, walk, breathe and swallow.
For 95% of children with this rare condition, called SMA Type 1, life expectancy is less than 18 months.
But a “wonder drug” called Spinraza could change this. In 50% of cases it can stop the advancement of SMA1 – and in 40% of cases, it reverses the symptoms.
The drug has been hugely successful in the US – but has yet to be approved in the EU. Yesterday, the company that makes Spinraza approved Temple Street as a site for the Expanded Access Programme.
“It’s a relief for us because Nellie’s symptoms are quite acute now. Even on Sunday we had an incident where she stopped breathing and we urgently suctioned her and everything, so time really isn’t on our side at all.”
If we could get her off of the breathing machine and if she was able to do some swallowing for herself, that would be a good start for us.
“A lot of people knew about our situation but we didn’t ask for help publically, but as soon as we did, across the board, politicians, the media everyone was really behind us – we don’t know how to thank people.”
With reporting from Órla Ryan.
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The sooner these bottom feeders are brought to justice the better.
Just seems like a no brainer that if you want to tackle crime at a high level you just target the proceeds of crime. I can’t fart without the taxman knowing and yet these lads can build empires by laundering money … less detectives and more accountants should sort it out.
@Pablo: What’s the going rate of tax for a fart these days? I could be in trouble
I suspect that more people are driven into poverty and maintained there by loopholes to protect the wealthy than are affected by the targets of this.
Yes, the drug culture and those who profit from it and the crime generated by their greed needs to be sorted but the consumers in a lot of cases are so called respectable members of society who don’t seem to see the link between recreational use of white powder and murder on the streets – usually on streets that are seldom visited by such people.
Drug dealing is a crime against society but so is creating loopholes to allow wealthy people to avoid their proper contribution to society from which they get a lot more benefit.
I opened a credit union account for my daughter a couple of months ago, the length of the form to fill out was unbelievable. My daughter said she never signed her signature as many times. Yet these people are able to acquire money from crime and very few questions asked.
have your say