Gemma Larkman-Jones, 45, from Brixton, south London, said she was “numb” after her son, Samuel, developed a rare but fatal form of progressive brain inflammation after catching measles.
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Gemma, 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 told the PA news agency.
“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.”
Samuel caught the highly infectious illness in 2014 before he was able to get the jab.
Though he recovered at the time, the tot fell victim a rare and slow-progressing form of brain inflammation called subacute sclerosing panencephalitis (SSPE) years afterwards.
SSPE is a rare complication of measles that generally develops seven to 10 years after a person has been infected, even though the person seems to have fully recovered from the illness, the Centers for Disease Control and Prevention said.
The risk of developing SSPE may be higher for children who get measles before the age of two, it added.
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.
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.
Gemma 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.”
Gemma 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 February 2019 after Gemma 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.
“Contrary to the little information on SSPE, it doesn’t always take months or years to go from stage 1 to stage 4,” Gemma wrote for a 2019 crowdfunding campaign to raise awareness for the deadly measles complication.
“Just months ago Sam was at School, riding his bike and playing football.”
Gemma recalled: “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.
Gemma 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.”
What are the symptoms of SSPE?
SSPE is a progressive neurological disorder that affects children and young adults that strikes the central nervous system sometimes years after a measles infection.
Initial symptoms of the illness are subtle, according to the National Institute of Neurological Disorders, and may include:
- Mild mental deterioration, such as memory loss
- Changes in behaviour, such as irritability followed
- Disturbances in motor function, including uncontrollable involuntary jerking movements of the head, torso and limbs
- Seizures
- Blindness
In advanced stages, individuals may lose the ability to walk, as their muscles stiffen or spasm.
As there’s currently no cure so SSPE, having an MMR jab is the only way of preventing this deadly complication.