A young woman with an ‘invisible illness’ has described the horrifying moment a group of girls threw McDonald’s soft serve ice cream at her car for parking in a disabled spot.
Stephanie Kelly, from Sydney, was born with life-threatening heart conditions and a potassium wasting disorder that saw her spend her teenage years in a wheelchair, but a horror car accident in 2018 left her stomach and intestines ‘paralysed’ – forcing her to be fed by a tube for 16 hours a day.
So while it’s not outwardly obvious to strangers that she requires a disabled parking permit, she does all the same.
‘They had their P-plates, they were probably 18, 19 maybe 20,’ Ms Kelly, 27, explained in a recent TikTok video. ‘At this point, my disabled permit is on the dash – you can see it, it’s very hard to miss.’
A young woman with an ‘invisible illness’ has described the horrifying moment a group of girls threw McDonald’s soft serve ice cream at her car for parking in a disabled spot
‘They looked at us with frowns, they were like “ugh that’s a disabled spot” and then went into the McDonald’s drive-thru which was right next to where we were parking.’
Ms Kelly thought nothing of the interaction with the ladies and walked into the pharmacy next door with her fiancé Adam Tompkin to collect her medication.
‘First thing Adam notices when we return is ice cream all over the front bonnet and front guard… they went through the McDonald’s drive-thru, came back out and threw an entire soft serve cone onto our car,’ she said.
‘We never got to ask them why they did that. I wear clothes that cover everything [my tubes] so I get that it looks like I’m not disabled and I’m parking there for the convenience but just ask me.’
Plenty of Ms Kelly’s followers shared similar experiences with strangers who just simply didn’t believe they had a chronic illness.
‘A friend of mine in her early 20s with cancer parked in a disabled space and a lady came and complained so she ripped off her wig in front of her,’ said one woman.
‘I had a lady stand in the middle of the bay and not let me husband park. The next minute I walk out to the car with my walking frame,’ said another.
Ms Kelly thought nothing of the interaction with the ladies and walked into the pharmacy next door with her fiancé Adam Tompkin to collect her medication
Not only was Stephanie born with a multitude of life threatening heart conditions and a potassium wasting disorder that saw her spend her teenage years in a wheelchair, but a horror car accident in 2018 left her stomach and intestines ‘paralysed’
‘I was the first diagnosed case of postural orthostatic tachycardia syndrome (POTS) at the Sydney Royal Children’s Hospital,’ Ms Kelly told FEMAIL of the condition that affects her blood flow.
For Stephanie the disease meant she couldn’t stand up without fainting for years, and resigned herself to rehab and a wheelchair while doctors frantically tried to find the right concoction of medication that would allow her to stand unaided.
She was also diagnosed with heart complications like Supraventricular tachycardia (SVT) and Atrial fibrillation (AF) as a young child, both of which saw her ending up needing a defibrillator ‘more times than she could count’.
‘I would be sleeping… doing nothing and suddenly my heart would be beating at 200 beats a minute,’ she said. ‘They had to use these medications that stop your heart’.
Stephanie was such a firm fixture at the children’s hospital until she was 17 that the young woman was granted a ‘Make A Wish’ by the Starlight Foundation.
She settled on a trip to Perth with her mum over a ‘crowded’ encounter with her teen crush at the time, Justin Bieber.
‘I would be sleeping… doing nothing and suddenly my heart would be beating at 200 beats a minute,’ she said. ‘They had to use these medications that stop your heart’ (Pictured with Adam)
She was also diagnosed with heart complications like Supraventricular tachycardia (SVT) and Atrial fibrillation (AF) as a young child, both of which saw her ending up needing a defibrillator ‘more times than she could count’
After finishing school in the hospital and working with a renowned doctor on her POTS, Stephanie was finally able to stand again in 2013.
With the world at her feet the remarkable woman chose to study nursing to give back to the professionals who had been her constant support for so long.
She got a job at Westmead Children’s Hospital in 2014 after completing her assistant nursing course. Then came TAFE to study as an enrolled nurse before she landed her dream job in 2016 at the children’s hospital she grew up in.
‘I was quite well during this time, I was sort of used to it. I didn’t have any heart surgeries while I worked,’ she said.
Stephanie was studying to become a registered nurse in March 2018 when a fateful trip to Max Brenner with Adam after work one night saw another driver T-bone their car at a roundabout. The car slammed into her on the passenger side.
She got a job at Westmead hospital in 2014 after completing her assistant nursing course. Then came TAFE to study as an enrolled nurse before she landed her dream job in 2016 at the children’s hospital she grew up in (Pictured on the wards second in from the right)
‘It basically means your stomach and intestines can no longer absorb nutrients like they used to. They’re asleep, or paralysed. I was given a number of types of feeding tubes – NJ, GJ, G and J – but ultimately I was losing too much weight to sustain just these measures,’ she said
‘I immediately remember having no feeling in my left arm and feeling really sore around my ribcage. It was a whirlwind of a year from then,’ she said.
Stephanie had a left brachial plexus injury, two slipped discs in her neck and a twisted ribcage after the accident, seeing her return to the familiar white walls of the hospital once again.
She was on medication for nerve pain for 18 months before doctors started to note down peculiar symptoms she was experiencing: vomiting, a lack of hunger and terrible stomach pain.
‘I was losing weight extremely fast. I was 75 kilos after the accident, went down to 65 in a month, and then 60,’ she said.
The young nurse was eventually diagnosed with Gastroparesis and Intestinal Failure, a rare result of the nerve medication coupled with her pre-existing medical conditions.
‘It basically means your stomach and intestines can no longer absorb nutrients like they used to. They’re asleep, or paralysed. I was given a number of types of feeding tubes – NJ, GJ, G and J – but ultimately I was losing too much weight to sustain just these measures,’ she said.
‘I was so depressed after that. Adam and I ended up doing a 30-hour round trip to Adelaide to pick up our poodle Oatley, which did end up making me feel a whole lot better,’ she said
Stephanie got engaged to Adam in November last year. They plan to wed in mid next year
In 2020, just after Covid hit and hospitals were essentially locked down from the rest of society, doctors decided Stephanie would need a TPN, or total parenteral nutrition, which is a method of feeding that bypasses the gastrointestinal tract.
‘I knew what a TPN was, I’m a nurse after all. I wasn’t totally sold on the idea at first because it can lead to metabolic issues and even sepsis later on,’ she said.
‘So I agreed to do it in the hospital rather than at home because it would mean I’d spend two weeks in hospital out of every month, rather than having to use the tube every day.’
Stephanie did gain some much-needed weight after her first TPN stint but unfortunately the kilos would fall off as soon as she left the hospital room. It was an uphill battle for months.
She lost her gall bladder to sepsis after a particularly nasty infection entered her central line and was starting to give up on ever feeling ‘better’ again.
‘I was so depressed after that. Adam and I ended up doing a 30-hour round trip to Adelaide to pick up our poodle Oatley, which did end up making me feel a whole lot better,’ she said.
Stephanie can still eat certain foods with her family and friends but she has to empty the contents of her stomach using a special tube because it won’t be absorbed
At the beginning of 2021 Stephanie agreed to having her TPN at home, which involves hooking up the fluid to a Hickman line in her chest for up to 16 hours a day.
‘I use the IV pole when I’m at home but I also have a backpack I can carry around with the liquid in it, so I can go out while it’s working,’ she said.
Stephanie can still eat certain foods with her family and friends but she has to empty the contents of her stomach using a special tube because it won’t be absorbed.
‘I’ll eat for the social and mental aspect of it, not because it provides me with any nutrition,’ she explained.
‘It’s funny because I’m technically the sickest I’ve ever been but I’m also the most stable I’ve ever been.’
While her goal isn’t to be on TPN forever – she hopes further research will result in a better method in time – Stephanie is using her platform on social media – and at the upcoming fashion show – to show how ‘tubies’ can live a fairly normal life and thrive.
‘I’m hoping my journey will spread awareness and promote diversity and inclusivity by showing everyone that I can live a normal, wholesome life even with medical devices,’ she said.
‘There are so many young men and women who have these devices, that are consumers in fashion, beauty and tech. More importantly there are so many children who have feeding tubes, central lines, wheelchair users, amputees and much more.
‘I think that people from all walks of life should be represented in mainstream media.’
You can find Stephanie Kelly on her Instagram page or on TikTok.
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