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Desperate Parents Spend Over $40k In Attempt To Figure Out What Left Their Healthy Teen Suddenly Paralyzed

PA REAL LIFE/COLLECT

A desperate couple have spent more than $40,000 trying to get a diagnosis for their sport-loving teenage son after he was struck down by a mystery illness which has left him partially paralysed.


Terrified that Valentino, 16, will never lead a normal life again, his parents Thalia and Nick Erodotou have spent $36,500 of savings and $6,000 of the $35,250 raised via crowdfunding site GoFundMe trying to find out what is wrong with him – all to no avail.

An accomplished sportsman until he was struck down by a baffling malady in January 2018, Valentino's once full and active life is now a shadow of what it was, according to Thalia, 41, of Oakwood, north London, who said:

“He went to his prom in a wheelchair. It was devastating."

Valentino before he got illPA REAL LIFE/COLLECT

She continued:

“His life is spent sitting in his room, doing a bit of work if he can and playing computer games. He's made friends online which keeps him going, playing with kids who do not know he is ill."
“But that is not the life you want for your son and he would much rather be out in the park with his friends."

The teenager's problems began in January 2018, when he developed a burning sensation in his chest.

Valentino and ThaliaPA REAL LIFE/COLLECT

Two weeks later Valentino, who has two sisters Aaliyah, 14, and Romea, 10, lost the ability to use his legs and has remained in the same condition ever since – despite his parents' tremendous efforts to find a diagnosis for their boy and, hopefully, a cure.

His dad Nick, 41, who runs a sales team at a software company, said:

“Valentino played all kinds of sports like football, rugby, tennis and free running and competed in gymnastics when he was younger."
“He was pretty good at most things he turned his hand to and was progressing well at school. He had a great bunch of friends, too."

Valentino with Aaliyah and RomeaPA REAL LIFE/COLLECT

But in January 2018 he came home from school complaining of a burning sensation in his chest and a sharp pain when he breathed in.

Four days later, when he was unable to move his body properly, Nick and Thalia, who runs a nail and make-up studio, took him to a nearby A&E.

She recalled:

“He was moving very slowly and the muscles in his eyelids had dropped."
“It was out of character to see a big, strong 15-year-old not able to move his body properly."

Doctors suspected he had gastritis, an inflammation of the stomach lining, because of the burning he described and prescribed him omeprazole, which is used to treat oesophageal problems like acid reflux.

Thalia said:

“I knew this diagnosis was rubbish because of the fatigue he was also experiencing."

Valentino with Nick, Aaliyah and RomeaPA REAL LIFE/COLLECT

“His legs completely slowed down and eight weeks after the initial chest pains, he couldn't walk at all."

Thalia added:

“We were in an absolute state trying to find out what was wrong with him. We went to see a private paediatrician who also said it was gastritis."
“Valentino is quite laid back and won't show you he's panicking or worried, but I knew he was frightened. I would see him at night punching the pillow, but he didn't know I could see that."

Valentino at his promPA REAL LIFE/COLLECT

Thalia explained:

“He didn't want to stress out his family. Nick was travelling a lot so Valentino felt he had to be the man of the house and put a brave face on."
“We were so worried. We were going completely out of our minds. Out of desperation, we would seek any help we could get."

After further blood and muscle tests with a neurologist came back normal, the family decided to travel to Cyprus, where they have relatives, in June 2018, to see a holistic homeopath.

Valentino after he got illPA REAL LIFE/COLLECT

While they were there, Valentino also had an electrocardiogram – a simple test to check the heart's rhythm and activity, to see if the problems were linked to his heart.

The holistic doctor suggested he could have Lyme disease – a bacterial infection spread to humans by infected ticks – and recommended a course of supplements, costing $1,450 a month, which they stopped when there was no improvement after four months.

Meanwhile, when they came home from Cyprus after three weeks, the family also attended another appointment with a paediatrician, who did more blood tests, as well as giving Valentino a brain and spine MRI, but the results again came back normal.

Valentino after he got illPA REAL LIFE/COLLECT

It was then suggested he could have chronic fatigue syndrome (CFS) and he was referred to a specialist clinic, which had a waiting list of several months.

Thalia recalled:

“We were always hopeful that the next appointment would be the one that would provide answers. But it would come and go and we would be in the same situation."
“When out and about, our son would be in a wheelchair. He couldn't walk at all without someone holding him up."

Thalia said:

“He still has all the same symptoms he started with – the drooping eyelids, no strength in his legs, the burning in his chest and the fatigue. Nothing has changed."
“He stopped going to school in February 2018, a month after he became ill, as he couldn't manage it. He had some home tuition, but not enough to keep up and that has finished now he is 16."
“We knew he didn't have CFS, as he's never had a constant urge to sleep, it's his body that's weak and tired."

Valentino, Aaliyah and RomeaPA REAL LIFE/COLLECT

Taking to social media in June 2018, the family shared videos of Valentino in the hope that someone would get in touch offering answers. They were inundated with messages of support although, sadly, no one offered a solution.

Desperate for a diagnosis, they dug further into their savings, spending £8,000 on seeing another private doctor, who said he had gluten ataxia – a rare autoimmune condition where the body's reaction to gluten can cause damage to the cerebellum in the brain, which can result in problems with co-ordination, balance and speech.

“We put him on a really strict gluten free diet," said Thalia.

“We were told if even a grain of gluten passed his lips, it would set him back three months, so we only gave him meat from a special farm that didn't feed the animals grain."

Valentino before he got illPA REAL LIFE/COLLECT

Thalia recalled:

“We became obsessive. Valentino didn't leave the house. Nobody could even bring a biscuit in, because it was so risky. We had to watch everything we did and touched. That went on for three or four months."

When he again showed no sign of improving after four months, it became clear the diagnosis was not correct, so the couple took him to another homeopathic doctor, who suggested a rare disease specialist might be able to provide answers.

Nick explained:

“At this point it was really affecting Valentino psychologically. He would get his hopes up and think we were finally going to find the answer."

Valentino and NickPA REAL LIFE/COLLECT

Nick continued:

“The illness was really restricting him and he didn't want to interact with people or see his friends, because he couldn't do things he wanted to do."
“When he went on holiday he remembered what he used to be able to do like swimming, snorkelling, jet skiing. It was just a reminder of the things he now couldn't do."
“It was a battle to keep him upbeat as we didn't have any answers."

Valentino with Thalia, Nick, Aaliyah and RomeaPA REAL LIFE/COLLECT

Even Valentino's sisters were being affected by their big brother's illness.
Thalia added:

“It was affecting them quite badly."
“They are younger than him and look up to him, so they were really scared. Romea especially started experiencing anxiety and had to take time off school."

Meanwhile, the CFS clinic had confirmed that he did not have the condition and in May this year, the family saw a rare disease specialist, who performed a lumber puncture – taking fluid from Valentino's spine – to test for conditions affecting the brain. Sadly, again, it failed to provide any answers.

Now they are waiting for more blood test results to rule out mitochondrial disease, an inherited chronic illness causing debilitating physical symptoms including loss of muscle coordination, and functional neurological disorder – neurological symptoms that affect the functioning of the body.

They also plan to visit Cyprus again, this time to see a geneticist, and they are considering trying to get him an appointment at the Mayo Clinic in Minnesota, USA – a world renowned clinic specialising in treating difficult cases – but that is very expensive.

Thalia said:

“Valentino's a 16-year-old boy and he's missed out on a whole year. He hasn't taken his GCSEs. He did have some tuition for a couple of hours a day, but how will he catch up?"

Valentino and ThaliaPA REAL LIFE/COLLECT

“We have spent just under $36,500 in savings, $6,000 from the GoFundMe page and rest of the money raised via the page will be spent on further tests. Every penny we can raise now is greatly appreciated."

Thalia added:

“He's not had a DNA test, genetic tests, or seen a rheumatologist or an immunologist yet."
“We are trying to tick off all the specialists that can potentially find anything. We're not ready to say, 'We've done enough'."

Valentino with his sisters in hospital having testsPA REAL LIFE/COLLECT

Thalia continued:

“He's got the rest of his life ahead of him so, God willing, we will find an answer. We want to give him a fighting chance."

And Valentino's parents will do whatever it takes to get the best help available for their boy.

Explaining how they are getting through this, the darkest period of their lives, Nick, who also took a junior role with a lower salary, so he does not have to travel so much, added:

“We try and show an example to Valentino that sometimes in life you get dealt a bad card and you have to battle through."

Valentino after he got illPA REAL LIFE/COLLECT

“He has to push through it and push against it. It's our duty as parents to try and instil that fight in him, rather than letting it get to him. It's not easy, but we need to make sure he does not give up."

Nick continued:

“These days with new technology and medical advancement, at some stage we will find what the issue is. But you can't do that if you have not got the right mindset. We need to stay positive."

To donate to Valentino's fund click here

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When you know your kids backwards and forwards, this is the best tool in your arsenal.

Getting our kids to listen to us is not always the easiest of tasks. They're willful and stubborn, but we've got a mighty weapon they are rarely prepared for: reverse psychology. Getting them to convince themselves to want to do something against their own initial intentions takes some work and a whole lot of creativity, but a little sneaky manipulation goes a long way. Here are some clever parents' tricks that are definitely worth taking notes on.

Redditor u/LeanderD Asks:

Parents of reddit, what's your best example of reversed psychology on your kids that actually worked?

He Floated His Idea Through A Back Channel

Giphy

Wanted to name my boat. Anything I would think of was dismissed as stupid by my 13 year old son. After deciding on a name, I confided to a male friend my son liked. Made my friend suggest the name as though it was his idea. My son thought the name was perfect. Done.

calypsodweller

We Always Want What We Can't Have

One of my best friends through childhood used to be punished with no salad if she misbehaved. She cherishes salad now and would always try to eat as much as possible during school lunch. Coincidentally, her now husband used to be punished with no books, it had the same effect. I think it's hilarious that they'd be hitting the salad bar and library like some black market their narc parents couldn't reach hahaha.

cookiearthquake

A Deceit That's A Cut Above The Rest

Giphy

Don't know if this counts, but, at my high school (private, boys only) in the 1960's, they made a big deal about how long your hair was, and would occasionally order a boy to go home and "get a haircut".

I thought it was stupid, until years later, a master confided to me at a reunion that the policy was deliberate. The school figured we'd spend so much energy rebelling about hair length, that we would ignore other aspects of teenage rebellion. (Not?) Surprisingly, they were mostly right.

FrankDrakman

Damn! That's smart. Wow.

fangxx456

Oh they don't like long hair?

I'll show them. I'll grow my hair out as lon- what?! No I don't want to go "party"? I gotta try out this horse shampoo.

DankeyKang11

The Forbidden Book

Hi I was a victim,

There was a forbidden book that I was not allow to read on the shelf. My parents said I could only read it if I behave myself.

It was summer holidays and I was playing games all day (after 6 hrs of summer homework). One day I was home alone and had the opportunity to grabbed it. I read like half of it in one go. It was 5000 years of Chinese history.

Safe to say I was bamboozled.

oddstodd

Flowers Of The Queen

My parents always told me my broccoli were the flowers of the queen and that I really shouldn't eat them, or else the queen would get very upset! I, of course, ate the whole broccoli in a few seconds.

Subwoofy

I'm telling the queen and she's gonna be pissed

draculacletus

Sleeping Beauty

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I taught my kids when they were toddlers that no amount of yelling, shaking or hitting can wake a sleeping adult. The only thing that works is a gentle hug and/or a nice kiss on the cheek.

Edit: Probably needed some more details for the reverse psychology aspect to be clear. It went something like this - Step one, tell the kids I'm going to sleep and nothing they do will wake me (head buried face down is the safest position). Step two, after the initial onslaught dies down pretend to awaken on your own. Tell them you got a bit of nap left in you and nothing can wake you, especially not hugs and kisses.

DrMethusael

Holy sh*t...if my daughter woke me up like this I would buy her a pony.

All-Seeing_Elon

I am saving this comment because this will save lives if I ever have kids, stg.

smerter

A Walk In Someone Else's Shoes.

Split custody with my ex. When my son was around 10, he visited two weekends a month. I was waiting tables and didn't have a huge amount to spend, but he was so needy from divorce (and I'm not blaming him, it was ugly), he begged constantly for MORE when he was with me. Whatever more was, it didn't matter... he'd be eating ice cream cone and begging for teriyaki.

I finally realized that he just felt empty, and getting MORE whatever from me wasn't filling him up. His next visit I handed him $100 in cash and told him it was our food/fun budget for 3 days and two nights, and he was in charge of it. I bought him his own wallet to carry. We figured out how many times we were going to eat and what we were going to do, and he paid. He got to keep whatever money he had left...thought he was rich...then realized just how much everything cost. Well. Shoe on other foot then. If we had no money for food, we ate leftovers - and I didn't contribute more to pot. After a few weekends of running short or not getting something he actually wanted because he was foolish with funds, he started to really think about how to spend that money. He budgeted and kept to his budget. And a few times he actually went home with a little cash for his private stash.

Many years later, he thanked me for this. It really changed the way he thought about money and love.

Augumenti

This Is Worth Giving A Shot

Took my 3 year old son to one of those doctor's visits where he was going to get a shot. He was worried about the shot on the whole drive over, almost to the point of tears. We get to the doctor's office and a nurse subtly lets me know that my son is not just scheduled for 1 shot, but 5 of them in the same visit.

I turn to my son with an exaggerated smile and tell him, "Good news! They figured out how to take that one big shot you were going to get and instead break it up into these 5 little tiny shots so it won't hurt nearly as much!"

You could see the relief wash over his face. He stopped squirming and relaxed completely. He took the first shot and even smiled and said "It's true! The small ones don't hurt!"

We actually made it through the third shot before the effect wore off and reality kicked in. Still... I counted it as a victory.

blackbird77

Put This To The Taste

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My mom would tell me she only lets me eat soup after candy and she'd only buy me candy that i didn't like. After a few times, i stopped trying and begged her to let me eat soup first. She gave me a smirk and told me go ahead. This doesn't sound as evil as it was. But trust me i suffered.

turkeypr0

So what was the candy?

Poster_Main

Mint chocolate, raisins, stuff like that. I still hate them to this day. Who the f--- thought while eating chocolate "hmm id like some tooth paste with this."

turkeypr0

This is Truckin' Awesome

Mum had sworn a bit around the house.

When 4, while out at the supermarket, I said F word really loudly.

Very quickly and intently, she asked if I had just said "Truck" and said that was a bad word and not to ever say Truck like that again.

I thought that was the bad word so used that when being naughty.

GodOfTheThunder

The "Silly Mom" Routine

The "Silly Mom" routine.

My kid, and a few other kids I've known, would balk at getting ready to go. I'd grab their clothes and say, "Well, if you won't put on your clothes, I guess I'll put on your clothes. Cute shirt, by the way! Does it go on my foot?"

NO!

"Does it go on my head?"

NO! IT GOES ON ME!

"Oh, that's right, thanks! So, it must go on your legs, right?"

NO!

"I just can't figure this out! Where does this adorable shirt go?"

[kid grabs shirt and puts it on] ON MY TUMMY! SILLY MOM!

"Oh, thank you so much! Now what about these pants? Shirts go on tummies, so...the pants go on the tummy, too, right?"

NO!

[continue until kids have dressed themselves]

I would also do things like hand the kid my keys and say, "Alright, you're driving, I'll sit in the booster seat in back," attempt to feed the kid by putting a spoon up to his ear or his belly button, and attempt to put away his toys in the refrigerator.

insertcaffeine

Some Foot For Thought.

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My mum would always yell at us "if you don't do X, you have to go to bed without socks!"

I never wore socks anyway, and I'm ashamed to admit that this worked.

Splittsky

That would work really well on my son, or make him cry for a really long time... He's 3 and over the last few weeks has decided that he is fully unable to sleep without socks on.

PJQueen

Toddlers man. Completely unpredictable.

SheaRVA

I'm Greens With Envy

My mum had a friend that would put vegetables on her own plate and not the kids.

When the kids asked she would be reluctant to share, "that's grown up food. But I suppose I can let you have a little."

Her kids grew up loving vegetables.

I sat at the dinner table for 3 hours staring at the yucky cauliflower I refused to eat.

laik72

This reminds me of an instance when my child convinced my wife and myself to change our plans for dinner. We were in a grocery store to pick up something quick and easy to eat that we wouldn't have to prepare. Our daughter, wanted none of that, she demanded that she wanted a salad from the salad bar. We started to argue back, but then realized: "Our child demands that we feed her vegetables for dinner instead of a microwaved meal, why are we saying 'No?'"

We had salad for dinner that night.

Galaxy_Ranger_Bob

The Power Of Choice

I don't so much know if you would call it reverse psychology, but I didn't realize it until my dad told me this.

When there were chores that needed doing, he noticed if he asked me to mow the lawn, I would complain and procrastinate. But if he asked would I rather mow the lawn or wash the windows, I'd pick one and just get it done.

Shattered my brain when he told me when I was in my twenties. I use it when I'm coaching or baby sitting all the time and it almost never fails.

AppealToReason16

The Boy Who Cried 'Ouch'

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I've done this one with tens of kids. Any time a kid gets "hurt" (falls down on grass, gets gently hit in the face with a ball, etc.) instead of stopping the activity to pick the kid up and see if they're ok you just scoot them off to the side and resume. Within 10 seconds of not getting all the attention and seeing the fun is resuming they pop right back up and are magically healed.

This of course is only for the "injuries" that aren't actually injuries.

pedanticProgramer

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