A mother whose child died aged six from a brain inflammation caused by measles hopes sharing her story will encourage parents to “vaccinate more” - as cases of the virus rise in London and across the country.
Gemma Larkman-Jones, 45, from Brixton, south London, said she was “numb” after her son, Samuel, developed subacute sclerosing panencephalitis (SSPE), a rare form of progressive brain inflammation, after catching measles.
Ms Larkman-Jones, an admin officer, believes his death in 2019 was avoidable had he been vaccinated with the measles, mumps and rubella (MMR) jab, but said he had been put on a delayed vaccination programme.
“Samuel didn’t need to die and that’s the guilt I carry every day with me,” she said.
“He was on a delayed programme because he had constant chest infections which later turned out to be asthma.
“(Doctors) wanted him to be as healthy as he could before he had the MMR.”
Professor Dame Jenny Harries, chief executive of the UK Health Security Agency (UKHSA) has warned that measles is spreading among unvaccinated communities.
She said a “national call to action” is needed across the country to ensure children are vaccinated against potentially deadly measles.
Vaccination rates across the country have been dropping, but there are particular concerns about some regions, including parts of London and the West Midlands.
Measles cases in London have almost trebled in a year, according to the latest figures. A total of 104 confirmed cases were reported in the capital between January and November last year, a rise of 188 per cent on the figure recorded in 2022.
Around half of all cases recorded last year were diagnosed in London, according to figures from the UK Health Security Agency (UKHSA). The highest number of infections was reported in children aged five to 10.
Last July the UKHSA said that low vaccination levels could lead to an outbreak of up to 160,000 cases in the capital.
Barnet and Haringey Council wrote to parents to warn that children who were not vaccinated against measles would need to self-isolate for 21 days if a classmate was infected with the disease.
Meanwhile, figures released by the UKHSA show there have been 216 confirmed measles cases and 103 probable cases in the West Midlands since October 1 last year.
Ms Larkman-Jones wants more parents to consider having their children vaccinated sooner.
She said: “I honestly think that if people knew that this was a possibility they would vaccinate more.
“Even if it just makes one parent question, how many lives could that one child being vaccinated save?
“I don’t want any other parent to go through this.”
She also wants to debunk preconceptions people may have about measles and hopes to highlight the potentially dangerous side effects of the virus.
“People just think it’s a bit of a temperature, but I think they’ve forgotten that people can go blind, people can go deaf, people who seemingly sailed through measles can end up years down the line with SSPE,” she said.
“I honestly do believe that people just think that measles, like chickenpox, is part of being a child and it’s so not.
“I think (my story) will make people think ‘although it’s a risk, it’s still a risk, am I going to risk my child dying for something that he doesn’t need to?'”
Samuel developed measles aged two in 2014 and recovered from the virus, but was admitted to hospital in 2019 after Ms Larkman-Jones noticed he often lost his balance when walking.
In February 2019 Samuel was transferred to St Thomas’ Hospital where a lumbar puncture and an MRI test found he had SSPE.
Ms Larkman-Jones said: “He started to lose the function to eat and swallow. He couldn’t walk and he couldn’t talk, we had to tube feed him.”
She said that on March 17, 2019, Samuel fell into a “vegetative state” after going into a coma, as doctors told her her son’s SSPE condition was incurable.
She said: “(Doctors) started talking about ‘if the worst were to happen would you want (resuscitation)?’
“I remember thinking, I’m just coming to terms with this disease I’ve never even heard of before and you’re talking about this?”
Samuel, described by his mother as “a very clever little boy”, died on April 30, 2019.
Ms Larkman-Jones wants to share her story to help highlight the risks of SSPE and measles.
“Everyone kind of knows that you might get deafness or you might get blind from measles, but it seems that SSPE isn’t talked about because it’s rare,” she said.
“I think if anyone’s got a chance of getting it people should be made aware of it.”