EIGHTEEN months was how long TOWIE’s Kelsey Stratford and her family were told her little sister would survive.
The tearful reality star, 22, was inspired by little Kennedy to go into care work, and thanks the NHS for keeping her sibling alive despite impossible odds.
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Kennedy, now 10, was diagnosed with spinal muscular atrophy type 1 at just a few weeks old, which has left her paralysed from the neck down, unable to speak and swallow properly.
Around 1.6million people in the UK carry the gene that causes SMA and 1 in every 10,000 babies is born with the condition.
A child born with SMA type 1 is expected to die before their second birthday. Those who develop the other types in later life have a normal life expectancy.
“I honestly don’t know what we’d have done without the NHS,” she told The Sun through tears.
“She is on constant medication and oxygen, which they provide for her. They do amazing work.
“Without them, we wouldn’t have been able to care for Kennedy.”
Kennedy is mainly treated by the team at Great Ormond Street Children’s hospital – who have seen the family through incredibly scary times. In emergencies, she is seen by more local NHS medical teams.
“Kennedy is like the boss of our family and has the biggest personality,” Kelsey said.
“But things are difficult. Every winter she ends up in intensive care without fail because her immune system is awful.
“During Covid-19 she was on life support, and we didn’t know if she’d survive, but the medics were amazing and helped her pull through.
“I can’t thank them enough for caring for my sister when she’s not feeling her best.”
Kelsey, a trained carer, is supporting The Sun’s Who Cares Wins awards, which celebrate the incredible medics, charities and ordinary people who save lives and go above and beyond.
There are nine categories including Best Doctor, Best Team and Unsung Hero. Shortlisted nominees will attend a star-studded event broadcast on Channel 4.
Kelsey said: “The NHS have been incredible to my family and kept Kennedy alive. If you have a health hero, please nominate them for The Sun’s Who Cares Wins.”
Devastating loss
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Kelsey was just 12 when her mum gave birth to Kennedy and her twin brother, Karter. They quickly realised the babies weren’t progressing normally, leading to the SMA diagnosis.
Tragically, four months after their birth, Karter died from the condition, and Kelsey’s mum had to break the devastating news to her other children.
“I don’t really talk about this part of it much, so it’s really hard,” Kelsey explains.
“It was a shock to find out that we probably wouldn’t have them with us for long. We decided as a family to try to make sure we gave Kennedy the best life we could for however long she was here.
“It’s amazing that she’s still with us now. She’s the strongest and more cheerful little girl I know.”
What is spinal muscular atrophy?
Spinal muscular atrophy is a disease which takes away a persons strength and it causes problems by disrupting the motor nerve cells in the spinal cord.
This causes an individual to lose the ability to walk, eat and breathe.
There are four types of SMA – which are based on age.
Type 1 is diagnosed within the first six months of life and is usually fatal.
Type 2 is diagnosed after six months of age.
Type 3 is diagnosed after 18 months of ages and may require the individual to use a wheelchair.
Type 4 is the rarest form of SMA and usually only surfaces in adulthood.
But there is one thing that Kelsey wants to finally help her little sister do – communicate on her own.
The reality star has teamed up with psychologist Paul Chaplin to create a special app that would allow the disabled child to communicate with her family.
Currently, Kenney can only communicate in grunts, laughing or by crying, meaning that often only her close family and carers are able to understand what she means.
Kelsey explains: “Everyday life for SMA babies is really hard because they can’t communicate.
“It’s frustrating as they have fully functioning brains but are trapped inside their own bodies. I know that Kennedy has things she’d like to say but can’t.
“I want her to have a chance at a more normal life. To be able to have a conversation with her would mean so much. We’ve never been able to have one with her talking back.
“It would change her life and the lives of others with her condition. To be able to just ask for something she needs would be incredible.”
Life-changing app
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The app, called Kennedy’s Kingdom, is in development, but Kelsey and Paul are searching for someone to help them make it a reality.
It would work by an alphabet being displayed on a screen, with AI software hovering over each letter for two seconds before moving to the next.
The user would be able to select a letter by making a noise. The letter would then be selected and dropped into a basket to spell out a word. No noise for five seconds would mean the word is complete.
As it gets used more and more, the AI would start to generate suggestions like predictive text based on what is often asked for or said.
For the past five years Kennedy has been using an Eye Gaze, which works by tracking eye movement to select letters.
But frequently it struggles to connect to the youngster’s pupils and is very slow, meaning she frequently gets frustrated and gives up.
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The app would allow Kennedy to speak to her carers and communicate with the medics who regularly care for her in hospital.
“The NHS gave my sister a chance at life, and now I’d like to help her live it to the full,” Kennedy explains.
“Kennedy can’t communicate with her friends at school or tell us when she wants quiet time or if she misses someone. She can’t even tell us if she’s in pain.
“This app would give her a sense of independence. It would help people look past the hospital bed that she lies in 95 per cent of the time.
“If someone can come forward to help make it a reality, it would mean the world.”
It is hoped that in time the app could be developed to allow Kennedy to send texts to members of her family.
It means that Kelsey would be able to hear if her younger sibling is missing her when she’s away from the family home.
Kelsey steps in sometimes at night to provide care for Kennedy and give her mum and stepdad a break.
She was inspired by her disabled sister to pursue a career as a carer.
“Kennedy was my inspiration to start because I’d grown up around someone needing care 24/7,” she said.
“I’m still doing it because I like helping people. I also spent time working in a disabled school. It’s just fulfilling work.”
If you can help build Kennedy’s Kingdom, please email [email protected]
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