Sebastien Hamilton
(Picture: handout)A mother is seeking access to a trial drug for her nine-year-old son that she hopes could save his life.
Severine Hamilton is trying to obtain a prototype enzyme replacement therapy for her son Sebastien, who has a degenerative and life-limiting condition. The drug, which is made by the US firm Allievex, is being trialled at several hospitals across the world including Great Ormond Street, where Sebastien is an outpatient.
His doctor at Great Ormond Street is said to support Sebastien being allowed the drug on a compassionate basis, after he was denied access to the trial because he took part in a previous company’s trial for a different drug.
Ms Hamilton has been supported in her battle by celebrities including Coldplay singer Chris Martin, footballer Marcus Rashford and actor Hugh Grant, who have each sent Allievex boss Tom Mathers private messages urging him to help Sebastien.
Ms Hamilton, a producer from Chelsea, said Sebastien had been denied the chance to receive the Allievex drug because he had previously taken part in a trial run by a different US firm, Alexion, from the age of two.
His neurological condition, known as mucopolysaccharidosis type IIIB (MPS IIIB), means he loses the ability to remember words and, without a breakthrough, will lose his independence and become wholly dependent on others, before moving to palliative care.
Drug trials often exclude patients who have received other treatments but an independent expert told the Standard there was “no scientific or ethical rationale” to deny Sebastien the drug. He has not received any therapy since his participation in the first trial ended at the age of four.
Ms Hamilton has spoken to Mr Mathers and said: “They have still continued to use the reason there is not enough of the drug.”
She hopes it would “slow the process of deterioration”. She said: “It’s an awful journey if you just let it progress. The deterioration is very rapid and very ugly.” Martin sent Mr Mathers a video message and Rashford and Grant each sent a letter, both urging help for Sebastien, after Ms Hamilton asked for their help.
She said Sebastien, who is able to attend a mainstream state school, was full of vitality and loved music and riding. “He is very strong physically,” she said.
Sebastien is under the care of Dr Spyros Batzios, a consultant in paediatric metabolic medicine at Great Ormond Street. He is a principal investigator in the Allievex trial and wants Sebastien to be included, Ms Hamilton said. “The more we wait and the older he gets, the less likely it will have an effect,” Ms Hamilton said.
Yann Le Cam, chief executive of Eurordis, the European Agency of Rare Diseases, has been trying to help Sebastien for more than four years.
He said: “The exclusion criteria in a trial that says that patients who have benefited from other treatments are not eligible for this trial… have no scientific rationale or ethical rationale.”
