The drug is not available for the child is 'cruel'

Brendan Marshall

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Alfie was diagnosed with dysstrophy dechenne in 2016

Alfie's hand family stands at football stadium. He has a blonde hair and give a thumb. — Alfie was diagnosed with dysstrophy dechenne in 2016

The 12 year old boy says the muscle dysthroction

A alfie, from the bumikry, annoying, diagnosed with dychenne dychenne (dmd) when he was four years.

Ujana semii penteli said new drugs, givinentat, can slow less, he’s before

Troubleshooting Trust it is not in a position to take place with the implementation of givinostat as “the resources resources will be required to ensure the results can be safe”.

Alfie said the medicine that really helps him with others with genetic circumstances

The Alfie's Family (left handed) and his family. A woman behind him has a blonde hair, wearing beige coats and high black and white. The boys next to him wearing the blue blue shirt of the red jacket, blue shirt bright, brown shoes and brown shoes. Her father jamie wear black glasses, blue check blazer and blue shirts. They all stand in front of the tree. — Alfie said the medicine that really helps him with others with genetic circumstances

There are many types of muscular dymstrophy.

They are inherited the genetic state of genetics as little as a muscle to weaken, leading to a level that increases.

DMD is the most common and severe form – it usually affect boys in a small bar child and many people have a situation that only lives in 20s or 30s.

Says on the BBC Radio Ulstery, Mr Pentony screen say there are 13 men in Ireland that can benefit from drugs.

“Who will be able to say 13 kids can cause this that some of them can walk next year?

“Time there is a muscle when it comes to Duchenne. Your lung is a muscle, your heart and most of the death boys from failing.

“They (belstf trust) someone doesn’t have capacity, they don’t have a nurological taking, which does not have neurological to treat the boys.”

Jamie with their hands around Alfie. Jamie wore glasses and glaze blue light and upper black and upper case below. Alfie has dark hair and wear Jerey ball. Screen and nalan showed branding can be seen right. — Alfie says people needed for drugs now

Alfie said the situation cannot stop him from walking, but the doctor has said that he is because he “do so, it will happen”.

“Your drug truly help me, it will give me a lot, but there is another children who will stop the way, so that.

“It cruel they don’t give this medicine to the child in the Northern Ireland by this disability. We all have the right to help.”

An inflammed anti-inflammatory drugs, Givinentat, has been approved to be used in the UK by regulator behind and available for strict active people, in NHS.

Believe individuals should be applied to take part in early (cheap) access program.

Pay back near: “drugs available for initial access program (

“Now, the help of Belfast is not in a position to proceed at the bottom of the cheap. We know this to disappoint to family and trust by law I’m sorry.”

‘Time of muscle’

Una farrell, from Amal Dochenne Eb, says: “It’s been worried with disease that makes fun and time can’t be given to it now.

“We understand that the resources are a large matter, but it has been known only a number of years of drugs.

“No medicine for muscle dystrophy – finally a treatment that the data showed can be slowing it.”

Access to a regular health service for givinostat that will depend on one clue from a good assessment body.

Irish Irish Health Darkin says it has been searched for the patients and family to access and treatment of health and drug services darkings.

“Service maintains a formal and good link. In practice, this means treatment already suggested by regularly in the UK is also used in the URISTER UNDER UNDED IN KNOWNS.

“Self developing linies and clinical clinical effectiveness of DMD treatment in six-year-old and over-michael of the committee for May 2025.” “

You can listen to NOlan Interview Hai,

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