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Help us find a diagnosis

£29,496 of £15,000 goal

Raised by 615 people in 11 months
Created September 11, 2018
Family
on behalf of Thalia Erodotou
We're desperate to get some help for our nephew, Valentino.

Valentino is a fun loving 15 year old boy who loves gymnastics, running, football, video games and hanging out with his friends. He was looking forward to taking up parkour (free running).

During the last 8 months, he has been in constant pain and has lost the ability to walk unaided. He no longer sees his friends, and is unable to go to school and enjoy the things a normal 15 year old would do.

The family have spent months visiting the GP and hospitals via the NHS, but so far these have been unable to find a diagnosis in order to even start treating his condition.

As a result his parents have taken him to various private paediatricians, neurologists and diagnosticians, all of whom have their own theories as to what could be causing his condition, the theories so far have been: Gastritis, Guillain Barré Syndrome, Lyme Disease, Chronic Fatigue Syndrome (ME) but so far none have conclusively arrived at a diagnosis.

8 months on and almost £20,000 spent on treatments and remedies already, Valentino's health is still declining with no answers forthcoming. All savings have now been spent and the family are no closer to finding a diagnosis.

It seems that not only has the money run out, but the list of possible conditions is being eliminated, too.

The most recent visit has been with a practitioner in London who has suggested that Valentino may have an infection that has somehow targeted his nervous system. The test and investigation phase here is another £2,700 before any treatments are prescribed.

A donation to help with his cause would be most gratefully received, however, what the family would really like is help identifying his condition to arrive at a diagnosis.

If you, your friends or any family members have suffered with a condition similar to his and have recovered or are recovering, please please comment on this page and let us know. Perhaps we'll find some information that will point us in the right direction.

I'll list the cause of events and his deterioration further down following the videos to see if anyone can identify with it.

This is Valentino's story.... we just hope that with some help we can make it a happy ending.
Please help us find a diagnosis. 
Thank you.
Nikki, Georgie & Stel (the uncles and aunts).


VALENTINO IN OCTOBER 2017 - PRIOR TO CONDITION



VALENTINO IN SEPTEMBER 2018 - CURRENT CONDITION



A detailed account of the last 8 months:

January 2018
Valentino came home from school with pain in the centre of his chest and a burning pain across the width of his chest. He felt generally tired and unwell.

Over a period of a week, his condition worsened, his eyelids appeared to have drooped and he was fatigued.

During the week, the emergency walk in clinic checked his blood pressure, listened to his heart and ran through symptoms but couldn't pinpoint a cause.

2 days later, as his fatigue had worsened and Valentino wasn't even able to hold a conversation without exhausting himself, he was taken to Accident and Emergency who carried out another blood pressure test and listened to his heart. An X-Ray of his chest was carried out as was an ECG and the results came back normal. The Doctor on the ward put his condition down to Gastritis and sent Valentino home.

February 2018
Within a week, Valentino went back to the GP; the GP agreed with the A&E doctor's diagnosis of Gastritis and prescribed Omeprazole to treat acid reflux. Valentino finished the course in 2 weeks with no improvement, in fact, he was getting weaker by the day and started to show weakness in his body, particularly his legs.

After further visits to the GP, he was referred to the paediatric team at the hospital. 

He had a series of blood tests and examinations all returning normal. The doctors still unsure of what the issue could be.

The doctors asked if he had suffered any trauma recently at home or school suggesting that this may be psychological. 

March 2018
With no improvement or diagnoses from the doctors, and Valentino's parents desperate for answers they took Valentino to a private paediatrician. He examined Valentino and could find no problem but increased his dosage of Omeprazole to rule out any oesophageal issues.

April 2018
This course of Omeprazole lasted for 2 weeks and his condition had deteriorated even further. He now needed support to walk around the house, using furniture or a family member to support him.

Valentino's mother contacted the paediatrician again to advise him that he was now unable to walk. 

The paediatrician strongly recommended a private neurologist in London as his walking had been badly affected.

The neurologist did urine and blood tests and carried out a thorough physical examination of Valentino. Her checks and all test results came back normal. She then suggested they go to Great Ormond Street hospital to carry out a private EMG / NCV test (muscle and nerve test).

The EMG / NCV test was carried out 2 weeks later, again all results came back normal. The neurologist therefore recommended a cardiologist to carry out a Echograph.

By this point the funds were quickly dwindling; so rather than spending £800 to carry out this test in the UK, the family travelled to Cyprus to have this test carried out there for less than a quarter of the price.

May 2018
The family travelled with Valentino to Cardiologist and Professor of Medicine in Cyprus. He suggested carrying out an  MRI scan of the Brain, a Lumbar puncture, an EEG and special tests for Borrelia and Coxiella.

The family were also recommended to go and see a holistic doctor in Cyprus. He carried out a full body examination. He carried out a test using a Vega machine and detected possible liver toxicity and Lyme disease. 

This holistic doctor recommended a course of supplements to strengthen his immune system to fight off any toxicity or infections in his body (including Lyme). The supplements alone cost £1200 per month. After almost 4 months taking these supplements, no changes or improvements have been seen.

June 2018
Finally, after waiting 4 months, the first NHS appointment came through for the paediatrics team at the hospital in the UK. He was kept in for 4 days.

During his stay, they carried out the following blood tests:
FBC, U&Es, CK, Rheumatoid Factor, ANA, ANCA, Lyme disease serology, TTG, ESR, Vitamin D, Bone Profile, Troponin T, Vitamin B12, Folate, TFTs, CRP, EBV IgG +ve, IgM – ve.

All the blood tests came back normal.

He also had a Brain and Spine MRI – results came back normal

 The physiotherapist gave Valentino exercises to try and reduce muscle wastage in his legs as he wasn’t able to walk, and agreed that he would need weekly visits with a physiotherapist and psychologist. 3 months on, and not one appointment for physio or psychologist has come through.

After 4 days of tests at the hospital, nothing certain could be found and so with no further explanations and they’re not too sure what else to check, the doctors are putting it down to possible CFS (Chronic fatigue syndrome) – they are referring him to the CFS clinic at UCLH. Yet again, after almost four months on and no appointments for the CFS team have come through.

August 2018
Continuing with the supplements prescribed by the holistic doctor – a further visit with him in August showed zero improvement.

September 2018
The family was recommended to visit Consultant Medical Herbalist in Harley Street, London. She specialises in identifying infections that could affect the nervous system. Bloods are taken here and sent to the USA and Germany for screening. Apparently, these tests are able to pick up infections that aren’t usually picked up by blood tests carried out in the UK. This consultant believes that the infections attacking his nervous system could possibly be caused by mould.

The tests recommended cost £2800 BEFORE any treatments are carried out or medication is prescribed.

+ Read More
Hi All.....again this update has been a long while coming. Sorry for not keeping you all updated, it has been our usual busy times!
Valentino mustered his strength and courage and MADE IT TO HIS PROM! So proud of him to show so much courage.
It was a mix emotion for him, but we won’t go into detail as it would contain a lot of private feelings.
Onto the medical side….
Since UCLH stated “He isn’t our patient” we have been constantly battling with Hospitals and Dr’s for referrals.
We managed to get a referral for Valentino at St Mary Hospital at the Tropical/Rare Infectious Disease dept.
The Drs there have been very accommodating. Valentino eventually had a successful lumbar puncture which returned clear results. We are waiting for the official results as well as detail to what exactly was tested and what further tests can be done on the fluid if any. We are also awaiting results on bloods taken during that time. His follow up appointment is on the 24th July.
After trying to get into GOSH for 18months we now find out that a referral is not accepted via a GP but needs to be from a Paediatrician. Our GP had been sending referrals for seemingly no reason. How could we not have been told this sooner? GP’s are not even aware of this and the Practice Partner confirmed it to us AFTER we asked the question
Recently, we had a follow up appointment with the CFS dept at UCLH. The previous Dr we saw who washed her hands of Valentino was no longer there and replaced with a Dr who showed compassion and understanding. She stated and underlined that in her experience Valentino does not seem to have CFS but some kind of FND symptom. Pretty much an unexplained medical symptom.
She said that she would refer Valentino to another neurologist at the Hospital for more investigation. The search continues and we are at least happy that further investigations are taking place.
On the 16th July we have our appointment at the Sheffield Ataxia clinic with the head Professor. We are 99% sure it is not Gluten Ataxia as previously outlined but as this Professor is highly regarded and in the neurology field it is worthwhile being seen by him.
In the meantime, we are trying to get him seen in August at the private clinic The Cyprus Institute of Neurology and Genetics.
People have been amazing during this period and have helped Valentino with charity events.
Another charity event coming up this weekend will be a football match at Haringey Borough FC 4pm ko. Please see link for more info: https://www.justgiving.com/crowdfunding/playingthroughadversity?utm_term=mq7pRDzg6&fbclid=IwAR21uMZwp_rSnCW9tZ26Rg80uwWlB7DiiGZ0fltBewbfHsqxxirefEXWjto
+ Read More
Hi All....this update has been a while coming so it will be a long one.

Where we thought we had found a diagnosis it seems that the Harley St specialist was wrong. After a visit to the Sheffield Ataxia specialist hospital, Drs there determined that Valentino did NOT have gluten ataxia.

Valentino thought that we were on the right path, it seems not. It's devastating to see my son going through this and feeling helpless.

The search continues....

Since then, our referral to the UCLH Chronic Fatigue Syndrome dept came through. This was 7 months after North Middlesex Hospital placed the referral. We of course KNOW it's not CFS and during the visit there the Drs confirmed this.
They stated that they would meet with colleagues and decide the best path of action and referral route for Valentino.
We provided the Drs with all of Valentino's files, tests and results that we had done (mainly) privately.
3 weeks waiting and nothing. Many phone calls and messages left with Secretary’s etc we finally get a call back from the Dr that saw Valentino. Her response, “Unfortunately Valentino is not our patient, we have seen him only once. We cannot refer him but can offer him rehab!”
The mind boggles. Who’s Patient is he? Rehab for what? He hasn’t been diagnosed with anything!
It seems that now these Drs have washed their hands of Valentino’s health issue.

There is so much detail in between, so much stress that I could write page and pages.

We are looking at taking this to the media. The NHS as a whole in this instance has been nothing less than pathetic.
We will keep trying to raise more funds as the faith in the NHS has diminished for this family. We have been told about options abroad, in the USA and Mexico as well as Russia. We will continue to search and give some hope to our son for a return to a normal life.
Valentino wanted to go to his Prom……..something so small but yet so major at this point in his life and he cannot.
Next week Valentino will be 16 years old. It will have been over 16 months since he fell ill. He has missed his whole 15th year of life.
Thank you for your generosity, please keep the shares going, someone out there may know.
+ Read More
Hi All!
It's been a month since the last update.

Valentino is increasingly finding this whole experience very difficult. He's pushing on but a little disheartened as he expected quicker results.

Tomorrow we have an appointment with a specialist clinic in Sheffield for Ataxia. One of the Dr's there founded Gluten Ataxia so we hope that they can provide even further information as to how we can help Valentino .

We'll provide an update as soon as we have returned to London.

Your positive energy and prayers toward Valentino are always appreciated.

Much Love xxx
+ Read More
Hello All

It has been a while since our last update; we wanted to see some strength in the diagnosis before posting.

Gluten Ataxia is the main cause of Valentino’s symptoms which was diagnosed via special blood tests from rare disease labs in Germany and USA.
The following link here outlines what Gluten Ataxia is about and how serious this is, we are hopeful we have caught it in time. https://www.medicalnewstoday.com/articles/320730.php

This is a rare auto immune disease and quoted in the article “Since gluten ataxia is a relatively obscure condition, a person's doctor may not have heard of or recognize it.” – Valentino’s GP as well as his Neurologist (Gt Portland St specialist) have not heard of it!

A breadcrumb can set the attacks back into full flow. The issue is so severe that Valentino is unable to have normal meat, it must be 100% grass fed as the gluten from grains will pass through the animals.

He is currently on a super strict gluten free diet (you’d be amazed how many foods carry gluten or gluten trace OR are prepared in factories that may contain gluten! Wow!), this will help stop the attack to the cerebellum, it will take time for this to happen and cleanse his symptoms. Other parts of his special diet are based on anti-inflammatory organic foods as well as keeping away from all food intolerance (highlighted via blood tests), he LOVES pork kebabs…..he can’t have Pork!...actually, the poor boy can’t really have anything! BUT….you will never hear him moan!

He is on medication to help with repairing the damage, reduce inflammation to the brain and other organs too.
In addition to this, he is on medication to help remedy the infections outlined in the previous update including Lyme’s Disease.

Valentino is currently having Chiropractic sessions as well as Specialist Physiotherapy sessions to aid in clearing paths for signals to be sent from the brain through the central nervous system as well as retraining his muscles to accept the signals in the correct way. He is having these sessions 2 to 3 times a week.

While Valentino is still unable to walk unaided, in constant pain and massively fatigued, we have seen some slight improvements in his animations, speech and alertness! On our last consultation 2 weeks ago the Dr noticed the very same and further underlined the length of time it may very well take to see more significant improvements.

Your kind donations have been a huge help so far. It is helping supplement his special diet, medications, follow up consultations with the Specialists as well as ongoing treatments (at a cost of apprx £2,000 per month)
Once Valentino has healed, unfortunately he will still battle with gluten ataxia, it’s a lifelong condition that he will need to be super vigilant of in order to prevent another bout of these debilitating attacks on his brain and nervous system.

Please keep sharing Valentino’s story, to not only help him BUT others who may also have this rare disease undiagnosed. Everything is truly appreciated!

Valentino has stated that he wants to set up a project to help undiagnosed Ataxia suffers….please watch this space as he develops his ideas! I know he will appreciate all your support.

Valentino is very conscious of how the disease has impacted the way he looks, I hope soon that he will have the confidence to record a personal video message to you all.

Much Luv xx
+ Read More
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£29,496 of £15,000 goal

Raised by 615 people in 11 months
Created September 11, 2018
Family
on behalf of Thalia Erodotou
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