One-year-old Reggie de Silver died hours after developing pneumococcal meningitis and septicaemia after suffering a bout of influenza.
A year on from his death his parents, Chantal Kingswood and Adam de Silver, have teamed up with UK charity Meningitis Now to organise a fundraising and awareness road trip, starting from Madeira Drive, Brighton on Saturday, April 20 at 11am.
The Beep Beep tour will see six old bangers and a team of charity ambassadors travel from Brighton to the Isle of Man, stopping at various locations and completing challenges as they go.
“The tour is in the lead up to Meningitis Awareness day on April 24,” explained Chantal, who lives in Portslade.
“This whole event is about raising not just money for the charity but, more crucially, awareness of the signs and symptoms of Meningitis across the country.
“Meningitis and septicaemia does not discriminate and can affect any one at any age.
“People need to become familiar with the signs and symptoms of meningitis and septicaemia and not wait for the rash as often this could be too late.”
On March 11, 2018 Reggie woke after a restless night, when he was sick after breakfast Chantal and Adam decided to call 111.
“He had never been a baby that was sick, we got an appointment but as he seemed himself at lunch we cancelled it,” she added.
A couple of hours later he dipped again and an appointment was made later that day.
The doctor told them it was a viral infection and to monitor him for 24 hours for any big changes.
At 8pm Monday, March 12 Reggie’s breathing changed and he became non-responsive. They rang 999.
After being admitted to Royal Alex Children’s Hospital in Brighton they could see a rash had developed on his groin area, legs and stomach.
Ten minutes after arriving he crashed and was put in an induced coma after a heartbeat was found.
A team from Evelina London Children’s Hospital was called and the plan was for him to be transfer him there once he was more stable.
He crashed a further two times.
“We left the room and spoke to the lead doctor. She said that if Reggie did pull through he would not be the same little boy that we once had and right now his organs were failing.
“I looked at her and I knew what she meant, she was saying that Reggie was not going to make it but the team will not give up till the very end.”
On the fourth time Chantal and Adam knew something was not right, and as they entered the room the doctors decided to stop.
“Adam was holding Reggie’s hand one side and I was holding the other and they stopped CPR,” Chantal said.
“I remember one doctor still continuing to do CPR and had to be told to stop.
“That was it, I saw his tiny little chest go down for the final time.
“I was in total shock, in silence, I couldn’t believe that had happened to me, but then again, what makes me so special that I am exempt of this.”
The tour is named after Reggie’s favourite toy a Little Tikes car he called his ‘beep beep’.
Steve Dayman, executive founder of Meningitis Now, said: “Reggie’s sad story shows how quickly meningitis can strike and the devastation it causes.
"We are 100 per cent behind the Beep Beep Tour and thank them for their efforts to fight back against this deadly disease.
“As a charity that receives no government funding we rely entirely on the generosity, energy and initiative of our supporters to raise the vital funds we need to carry out our lifesaving and life-changing work.
“Their efforts will make a real difference to those who are at risk from meningitis and those whose lives have already been changed forever because of it.”
The early symptoms include fever, headache, vomiting, diarrhoea, muscle pain, stomach cramps, rapid breathing or grunting, not wanting to be touched, fever with cold hands and feet.
In the UK, an estimated 22 people a day will contract the meningitis. Of those who contract the bacterial type 1 in 10 will die.