Jude’s Rare Life Changing Nerve Condition Support

Hello all, thank you taking the time to be here and read 10-year-old Jude’s story!!

We’re Emma and Peter, Jude’s Mum and Dad. 

Jude is proud big brother to his little sister Elodie.

Jude has a very rare nerve condition which the cause has been clinically undiagnosed and thus makes him 1 of 1 globally. 

Jude’s condition has not always been like this, he was an excellent cyclist, regularly completing 10 miles off road and could happily snorkel for hours chasing fish in the sea.

In July 2022 we noticed Jude had a shortness of breath and after a few checks with our GP things seemed to level out fine.

Whilst we were on holiday, Jude was struggling to swim in the pool and unsuspectingly choked whilst having lunch. For Jude this was incredibly unusual.

We subsequently had several trips back and forth to both the GP and our local Hospital, but even though checks were thorough, nothing could be found to explain the reason, nor explain his latest symptoms where Jude had an adversity to eating and weakening in his right arm.

On the run up to Christmas Jude was now notably unwell, but still, as ever, his usual happy and cheeky self, but we could see and sense something far beyond just ‘being unwell with a bug’. We were offered an appointment to ENT (Ear, Nose & Throat) at our local hospital, and it was at this check it was seen Jude had, what seemed like, an irregular swallow and because of the randomness of all the symptoms built up since the summer, Jude was kept in for precautionary observations.

The next morning Jude was unable to breathe properly and after a brief chat on the phone to mum at home, he fell unconscious. Unable to expel the CO2 from his lungs, he was slowly and silently suffocating - Dying in front of us.

He was intubated and placed onto a ventilator, not knowing this was the last time we was to hear him speak…. Well, for now at least we can hope.

The fear of the unknown was going through our heads constantly. To see our happy healthy boy suddenly change in what seems like such a short space of time, confused, and frightened us.

Jude was moved to the Evelina - London by their fantastic retrieval team and on arrival it

was apparent that the teams had already planned a whole raft of checks for him.

There were multiple IV lines and sensors all over him.

Over the last 10 months we have come to terms that Jude’s condition is understood from a symptom perspective, but the cause is still and may be forever unknown. It makes it hard to accept not knowing the cause, but we can, hand-on-heart say, that it feels like everything is being done to understand Jude’s condition - even having bloods and data sent abroad, Spain, Germany and even the USA are analysing his case.

We have promised Jude that no matter what happens and comes of all this, he’s still here with us and will be able learn more to help others within a similar situation.

Even though the cause is unknown, we know Jude’s Motor nerves are affected, preventing his muscles from being stimulated and thus making him weaker before his muscles no longer move.

He has a rare type of Motor Poly-Neuropathy, affecting random nerves. 

We have promised Jude that we would learn everything we can to support him!

We have kept positive and joked to Jude that this is the best science lesson he’ll have, and he’s

adapted to taking it all in and trying so hard to make the adjustments he needs. Even keeping up his schooling from his bed or wheelchair.

Emma and I have been Ventilator and Tracheostomy trained, meaning we can take Jude out in an attempt to make this new life as normal as it was before.

Jude has a huge love of F1 and car racing in general. It has been our go to sport to switch off from the tough days, even waking up at 6am so we could watch a Grand Prix together.

Jude loves his football. Having some little use of his legs means he can lightly swing them, with some skill too, to play football whilst in his wheelchair. Much to the amusement of his nurses.

As Jude is Trachy-vented and with a weakness of muscles, he is now non-verbal and is learning to communicate via a tablet and specialised software. Sadly, Jude had a reading and writing delay before his illness and thus making communicating even harder to adjust.

But Jude being Jude, he has learnt to adapt and use great eye expressions, being on the receiving end of an eye roll has become quite a thing now.

He has learnt to use small head nods and eye gazes to assist in the conversation, albeit with closed questions, he does so well and is so patient with us.

Although Jude is only 10, he listens very well and wants to learn, even being in his position and scared, he wants to be able to understand what and why tests are being conducted and why his condition is happening. Inside he’s still the inquisitive and fun boy as he’s always been.

Everyone has spoken so freely about how they like to spend time with Jude, he just seems to have this aura that the people enjoy being with him. Several nurses have taken time to read to him, discuss his schoolwork or learn about his passion for F1.

After 300+ days in hospital, we feel like it is leaving our safe space into an unknown world.

It is thanks to everyone who has played a part, no matter how big or small, in Jude’s treatment, support or education that he is still alive and with us today.

We now need to heavily adapt our home and life to keep Jude loving life as he did before, unbeknown to us we didn’t realise just how expensive and individual adaptations and equipment are.

A stairclimber chair, for example, would get Jude up to our living room to be part of family life, moving home just isn’t possible nor affordable!

Even a simple adapted vehicle has to be so bespoke to safely transport Jude and greatly increases their overall cost vastly. Something we also need to find funding for as these adaptations are not standard fit for a wheelchair vehicle.

We are being open on how financially vulnerable things have become and want to give Jude a life as such so he feels he’s living the life he would of been living before he was limited by his devastating condition, anything to help us with our new normal we will be forever grateful for.

THANK YOU!!