‘I’m in awe of her’: How severely disabled girl nearly killed by deadly superbug survived against all odds
- Credit: Archant
Even though she spent 15 days on a life support machine, with all hope seemingly lost, Maisy Kidd-Munnery was not ready to die.
Following a life-long battle against multiple disabilities including cerebral palsy, epilepsy and brain damage after being born nine weeks premature, the 14-year-old had developed a fighting spirit like no other.
It was a resilience so rare in anyone, let alone a teenager - but she would need every ounce of strength as this year's deadly Strep A superbug in Essex left her life desperately hanging in the balance.
At one point her beloved mother Sophie, who has devoted her life to caring for her severely disabled daughter, was even asked: would it be kinder to switch off the machine and let her go?
It was the cruellest dilemma for a mother with such a special connection with her daughter, built on years on love and devotion as the Harwich youngster worked incredibly hard to successfully improve her own health.
Yet even though Maisy could not speak, something told her family that this amazingly strong girl was not ready to pass away just yet.
With the inspiring support and love of both her mum and nine-year-old sister Poppy, as well as the incredible work of doctors, she defied all the odds to pull through.
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And even though the battle has worsened Maisy's already debilitating conditions - meaning she is now wheelchair-bound and unable to eat solid food - to her family, it shows her remarkable strength.
"I'm in her awe of her," Sophie said of her daughter, who now cannot use her arms and legs.
"She's the one with all the strength. I get my strength from her."
'We've been taking one year as it comes'
"You have this ideal that you're going to have a baby and that everything is going to be fine," said Sophie.
"We didn't have that at all."
Maisy was born nine weeks early in 2004 after her mother suffered severe pre-eclampsia during pregnancy.
Sophie said an emergency caesarean section "saved both our lives".
At first, Maisy seemed in pretty good health - but it soon transpired she had suffered two significant brain haemorrhages in what would be just her first battle for survival.
As time went on, Maisy developed several debilitating conditions.
She started having severe epileptic fits and was diagnosed with cerebral palsy, while a lack of brain development was identified as microcephaly - where the head and brain is smaller than normal.
She is also blind and has scoliosis, where the spine twists and curves, as well as a low immune system - meaning the simplest coughs and colds can leave her gravely ill.
"The first few years of her life were very up and down," said Sophie.
"Throughout her life we've been taking one year as it comes.
"Through fundraising we've been able to afford to provide physiotherapy and specialist equipment over the last couple of years.
"Over these last couple of years, she's fought so hard to get so strong. She got very good with her posture. She got to her strongest."
However her biggest fight was yet to come.
'It was touch and go whether she was going to make it'
"We've had quite a few times in her life when she's become poorly," said Sophie.
"This year has been the worst since she was born."
It all started with a common cold in January which, because of her low immune system, developed into respiratory syncytial virus (RSV) - which causes breathing difficulties.
"Because of her health, she's so much ore vulnerable to illness, especially during winter," Maisy's mother said.
"We dread this time of year."
Maisy's illness developed into Strep A, which although in most cases is harmless can be fatal if a particularly invasive strain - especially in someone with an already low immune system.
Hers was part of the deadly Strep A outbreak earlier this year, which was linked to 33 known cases and caused 15 deaths.
After two days at Colchester Hospital, she was transferred to St Mary's in London where she was put on a ventilation machine as she could not breathe for herself.
"It was touch and go whether she was going to make it," Sophie said.
"She kept getting infection after infection. When Maisy was very poorly, we were in the balance as to whether she was going to pull through.
"They said to me that I needed to think about whether it would be kinder to let her go."
But Sophie said her special connection with Maisy meant that she knew her daughter still had some fight in her yet.
"Maisy shows me what she can tolerate," she said.
"When the day comes that everything is a bit too much, I know she'll let me know that.
"Maisy might not be able to tell us that directly, but you have to look for it in different ways.
"This wasn't the time - I thought it might be, but she showed me that it wasn't. I knew that she just needed time."
She said making that decision, despite overwhelming medical evidence suggesting Maisy would not pull through, was tough.
"It's a hard place to be," Sophie said.
"You take a lot on advocating for a child who cannot speak. However the strength and power behind a child with disabilities is so amazing."
Maisy spent 15 days on life support before eventually being taken off ventilation, thanks to the "incredible help" and "amazing medical interventions" of doctors.
"They saved her life and we will always be forever thankful to them," Sophie said.
Maisy stayed in St Mary's for a total of three weeks before being transferred back to Colchester Hospital.
She continued to have problems and setbacks, but Sophie said the love of her family - and in particular Poppy - helped her pull through.
"The connection she has with her sister is absolutely amazing," her mother said.
"Poppy's influence has been such a significant one. As soon as she heard Poppy, it was like everything was fine again and everything was going to be okay.
"By all miracles, we managed to bring her home."
'Her whole being has changed'
Since finally coming home on May 15, everything in Maisy's life has changed.
"It's made life a lot more difficult," said Sophie.
"She's totally wheelchair-bound, with no movement in her arms and legs.
"There have also been some neurological changes - I'm not sure how it has happened, but she has gone back to being a three or four-year-old.
"She used to have quite a good social life but now she struggles to understand the world around her.
"With the neurological changes, it's like she's forgotten certain things. She gets very overwhelmed by the world around her. We've had to get her used to different sounds and noises again."
Sophie said that home has now become a bit like a hospital, as different equipment has been set up to help Maisy function from day-to-day.
Fundraising in the For The Love of Maisy appeal has been stepped up to support her recovery.
But Sophie said: "We're just grateful that she's here and that she's proved she wants to be here.
"Her health has deteriorated since the illness and her life has changed this year. But she's just got an amazing amount of fight in her. Her personality just shines through.
"People say to me: 'How do you do it? You're so strong - how do you manage it?'
"Actually, I get my strength from Maisy.
"As long as she keeps fighting, I'll keep fighting for her."