Brogan Partridge was holidaying in Cornwell for her parents honeymoon when she was struck by the deadly infection.
The now nine-year-old started vomiting after a day at the beach but her parents, Aimee and Craig Partridge, thought she had an infection and encouraged her to rest.
But soon after Aimee started to notice "bruises" appearing on Brogan's legs.
Brogan lost her foot to the disease, which took hold in June 2016, and has recently had her right leg amputated below the knee after years of pain caused by the infection.
Aimee said the bruises looked "nothing like" the tell-tale rash all parents are told to look out for.
The first sign something was wrong came when Brogan appeared to have an eye infection and was given antibiotics.
But 12 days later the bruises began to appear on the then seven-year-old's legs.
After seeing a GP, Brogan was rushed to Birmingham Children's Hospital where doctors were forced to amputate her left foot to save her life.
Mum Aimee, 27, from Bartley Green, Birmingham, said: “We'd been in and out of the sea all week so, at first we thought the first signs of the meningitis were conjunctivitis caused by swimming in the ocean.
“It looked nothing like a rash, it looked more like bruising – at the time I never thought it was meningitis and that’s the problem.
“When people are aware of what symptoms to look out for with meningitis, they say look for a rash but that’s not what it looked like to me.
MORE THAN A RASH What is meningitis, how do you get it, what are the symptoms and what is the meningitis B vaccine trial?
Brogan was fitted with a prosthetic foot and her parents, Craig and Aimee, thought the worst was behind them.
But now they’ve had to make the heart-breaking decision to amputate Brogan’s right leg below the knee, because she lives in constant pain.
The disease caused the blood vessel in Brogan's right leg to die, which led to circulation problems.
Aimee said: "Doctors thought her right foot would heal, so she had hours worth of surgery to keep it.
"She'd cry out in the night because of the pain. She'd say I just want to be normal and to play with friends at school like everyone else.
"Alongside the doctors, we all, including Brogan, decided that this was the best decision going forward for her.
“The remaining leg was 50/50 and it required major surgery but she had a reoccurring infection at the being on 2017.
“The infection has spread up to her knee and the leg is just too weak and could put her at risk later in life if we keep it.
“The main blood vessel in her leg died and it is not getting blood to her foot – also the tendon for the toes died too.
“The weaker the foot gets the more susceptible it is to damage.”
Aimme said that Brogan has faced every challenge without faltering and knew her only option is to lose her leg.
“It’s horrible because truly Brogan just wants to be a normal nine-year-old girl,” she added.
“She’s knows the process and it’s not nice but children tend to adapt quicker to situations and I think that’s what Brogan is going to do.
“Having one foot to having none is going to be very different for Brogan – she’s going to lose the last bit of independence she has.
“There are always risks in everything but this is the sole solution that we and the doctors came too.
“They can never guarantee it won’t come back.
“We always hoped it wouldn’t have to come to this but after seeing the impact it was having on her we thought it’s the best option we have.
“We don’t know if we keep that leg that in the next five years the disease might have gotten worse and spread further.”
The family were planning a trip to Disneyland later in the year, but now they don’t know if Brogan will be well enough to travel.
“We want to take all the children to Disneyland later this year but we can’t really plan ahead just in case Brogan had to go back to hospital, or she started to feel worse,” Aimee added.
“We don’t even know if she would be well enough at the time to even fly – we are pretty much taking it day by day.
“We can’t really make any long-term plans – it feels like our lives are on hold.”
Dad Craig, 31, a mechanic, added: “At first it was a big shock for all of us but at the moment we are at the point where we just want to get it over and done with really.
“The younger children are only three and four and this is all they can remember – they’ve grown up with Brogan having meningitis.
“But they don’t bat and eye lid they just see Brogan as their big sister."
The family are also fundraising for a wheelchair for Brogan, which will cost £2,000.
You can donate tot heir cause at their Go Fund Me page here.
A DEADLY CONDITION EASILY MISTAKEN FOR A HANGOVER
It can easily be mistaken for flu or a hangover in adults, but knowing the signs of meningitis can prove life-saving.
The deadly disease can affect anyone, but is most common in babies, young kids and young adults.
Meningitis causes an inflammation of the membranes that surround and protect the brain and spinal cord and can be triggered by bacteria or a virus.
If it is not treated quickly meningitis can develop in deadly septicaemia, or blood poisoning, that can cause permanent damage to the brain or nerves.
Around 3,200 people a year are diagnosed with bacterial meningitis and one in 10 die or are left with life-changing disabilities.
Viral forms of meningitis are less common and rarely life-threatening.
What are the key symptoms?
The symptoms of meningitis can develop very quickly, and include:
- a high fever – over 37.5 degrees (the average temperature)
- being sick
- a headache
- a blotchy rash that won’t fade when a glass is rolled over it
- stiffness, especially in the neck
- drowsiness, irritability or a lack of energy
- cold hands and feet
In babies the symptoms can be slightly different, they may:
- refuse to eat
- be agitated and not want to be picked up
- having a bulging soft spot on their head
- be floppy and inresponsive
- have an unusual, high-pitched cry
- have a stiff body
Source: Meningitis Research Foundation
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