Your body is slowly dying, then you find a drug which could stop it. But every day you wait you lose something

EVERY drop of water that fell from a melting ice sculpture of Seckin McGuirk in Parliament Square yesterday was a heartbreaking reminder that her time is running out.

- By Hanna Geissler Health Editor

The former maths teacher has motor neurone disease which is slowly robbing her of her independence, mobility and ability to speak.

A drug exists which could slow or even halt the progression of her symptoms. But although it is being offered to the NHS for free by the manufacturer while it is evaluated by regulators, no hospital near her will pay for the bed and the care needed to administer it.

Seckin, 57, told the Daily Express: “It’s extremely frustrating. MND is one of the most awful diseases that a human being could have to face. Your body is dying, slowly, and you live in it and can’t do anything about it.

“Then you find out there is a drug which may help and could actually stop the progression. But every day you wait, you are losing something.”

The life-changing drug tofersen can help around 2% of MND patients who have a specific form caused by the SOD1 gene mutation.

Mum-of-one Seckin was diagnosed with MND in June 2024 and had confirmation of her gene mutation last November.

The first sign that something was wrong appeared during a holiday to Turkey, when she went for a run along the beach and noticed discomfort in her hip. In the months that followed she found herself tripping over and unable to walk fast.

Toxic

Seckin said her diagnosis was “terrifying”. She was initially in denial but with the support of her devoted husband Richard, she started looking into treatments.

The SOD1 gene encodes a protein that helps to break down byproducts which can damage cells. Mutations cause the protein to form clumps in motor neurons, which can interfere with healthy cell functions or cause other proteins to malfunction.