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."
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.
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."
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."
“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."
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.
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.
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."
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."
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."
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."
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?"
“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'."
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."
“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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