“Jayden always used to run around saying ‘I’m a pirate!’” Natalie Nel tells me, fondly remembering the three-year-old son she lost tragically and suddenly to meningitis one month ago.
Little did she know that Jayden’s love of seafaring villains would later become the focus for a ‘Jayden’s Pirates’ Facebook group set up in his memory, asking for money to help fund research into the condition which robbed him of his life.
She said: “I had even bought him a pirate outfit for Christmas and pirates always want money so that is why we used that in the Facebook page.”
Jayden’s parents Natalie Nel and Terence Palmer have also set up a remembrance fund to raise money for the Meningitis Research Foundation, in an effort to create a positive legacy for their son’s too-short life.
The fund was started at Jayden’s recent funeral, where £141 in donations were made.
It is now the family’s aim to raise the profile of meningitis, ensuring that more people know the symptoms of this potentially fatal disease.
Natalie said: “Obviously I knew of meningitis and when they said to me he possibly has meningitis I thought, he might not survive this. I just want people to be aware really. I know raising money isn’t going to save Jayden but I want to have more children and this work could save other children.”
Jayden’s period of illness was alarmingly rapid. The evening before he died he had been sick and during the night he suffered pain in his legs. But, Natalie explained, she had walked with Jayden from their Rushden home into town the day before and had thought the aches were simply to do with the long trudge.
By the morning, an ominous purple rash had appeared across his body. He was rushed to hospital but 10 minutes after arrival he passed away, having been diagnosed with a rare form of group B bacterial meningitis, meningoccoccal septicaemia.
Natalie, 31, said: “I noticed the rash at 7.30am and I rang my friend, who is a nurse, and she came over. She said ‘we need to get him to A & E’. We got as far as Finedon and his eyes started rolling and he started fitting. At that point we rang for an ambulance. They started treating him for meningitis but by 10am he was gone.”
A great deal is still not widely known about meningitis by the general public.
The Meningitis Trust website states that two thirds of parents are not aware that current vaccines do not protect children against all forms of meningitis.
Although there is a vaccination for meningitis C, which is in the childhood immunisation programme, there is currently no vaccination for meningitis group B.
According to provisional figures from the Health Protection Agency, 25 cases of confirmed and probable meningitis were reported in Northamptonshire last year.
Jo Killick, community fund-raising co-ordinator for the Meningitis Trust, said: “More people are becoming aware of meningitis and when there is a case it is reported more.
“There is a bacterial kind and a viral kind. The signs are virtually the same. The early symptoms can be very like fever, headache and vomiting. They are flu-like. The initial symptoms can be misleading, but if people are concerned they should trust their instincts.”
Other symptoms can include a stiff neck, spots, a rash which does not fade when pressed, or pale blotchy skin, becoming drowsy or difficult to wake up, or having fever but with cold hands and feet. There could also be an aversion to bright lights.
As well as any of these symptoms, in babies and toddlers there might be unusual cries or moans, they may vomit or refuse food, or become floppy and unresponsive. There may be swelling to the soft spot on the top of their heads.
One challenge in battling meningitis is the close resemblance many of its symptoms have with other conditions such as flu.
Jo said: “If you have a concern, don’t wait for the rash to appear. We always say to families and individuals to trust their instincts, they know their family or themselves better than anyone. If they are not getting better it is very important to seek medical help.”
Viral meningitis is usually mild and mostly affects babies and children. While most people will make a full recovery, some are left with debilitating after-effects. Bacterial meningitis tends to be life-threatening, with as many as one in 10 losing their life to the condition.
There are still misconceptions about the illness, according to Jo. Although babies, toddlers and children under five are the most at-risk group, adults are also at risk, particularly as immune systems tend to weaken with age.
She said: “Some people think it just affects the under-fives or teenagers but anyone can get this. It is more common in the under-fives and in teenagers but it can affect people at any time.
“We try to raise awareness of the disease and help people become more aware of what the signs and symptoms are.”
Friends of the Nel family have been coming up with fund- raising ideas, including one friend, Ashley Warren, who is planning a half-marathon in Reading. There are also plans to celebrate Jayden’s birthday in the summer with a children’s party to help raise more cash.
Natalie added: “I think now I’m just trying to throw myself into the fundraising so that something good can come out of it. If we could help save one person’s life then Jayden would be a little hero.”
To donate to the Meningitis Research Association, through Jayden’s appeal, log on to www.meningitis.org/remembrance-funds/remember-jayden.
For details about the Meningitis Trust, log on to www.meningitis-trust.org. To support the appeal by organising an event call Natalie on 07850 586634. To find Jayden’s Facebook group, search for Natalie Nel on Facebook.