A Key to Unlock Locked-In Syndrome

£54,389 of £105,000 goal

Raised by 1,553 people in 5 months
Hello ! My name is Jennifer. My Sister, Mum and myself are trying to raise money for my brother who has been placed on life support in Phnom Penh, Cambodia, 6280 miles away from his family home in Thornton-Cleveleys, England. 

We know Charles as a hard working and healthy man. He was made redundant last year from his job at a call-centre in London and he decided to dip into his savings and take a year out travelling. 

He has been staying in cheap rental accommodation in Phnom Penh for the last few months. He and his Landlord have became friends during this time and it was his landlord who noticed on Thursday he hadnt heard from Charles in the last few days.  

Charles was discovered by his friend on Thursday on the floor of his flat and unconcious. His friend took him to a local hospital, CT scans were made and two large blood clots were found in his brain stem.  

He is only 38 years old, much too young. We can only guess how long he was on his own for and it is a miracle and testament to his health and strength that he survived.  

He was transferred yesterday to Cambodia's largest hospital in Phnom Penh. My Mum, an experienced nurse and his girlfriend travelled to Cambodia from England on Friday, a few hours after hearing of Charles' suffering.  

Although unconcious, Mum's first words to him last night made him cough and react. This has made us very hopeful.  He has since been using his eyelids to communicate with my Mum and his Girlfriend. 

Charles' is currently in a public government funded hospital and so the medical care is very limited.  Unfortunately transferring him to a private hospital in Phnom Penh will incur expensive daily charges, USD 2500 + a night, and the hospitals can be forceful in obtaining funds from family members. We are very fortunate with my Mum's medical background as we do understand that some are not this fortunate and their care can then go unregulated and often worsen with the limited facilities.  We are paying USD 400 a night for this care. 

My Mum is very concernced about Charles' well-being. Ideally, we would like to repatriate Charles to the UK. 

We understand that Charles did complete a travel insurance prior to travelling. However, we have since found out that Charles extended his travels by several months to take in Cambodia, but, his travel insurance was NOT extended. We do not yet have complete insight, however we believe it is highly unlikely that there is an insurance policy in place.  

As yet, we still cannot access any of his bank information. His bank has told us that we can only gain information and access with Charles' permission, which he is obviously unable to grant in his current comatose state, or, by providing his death certificate. We are in the process of applying for Deputyship with the Court of Protection, we hope to have this by early/mid next week. 

Although initially helpful in sending a junior rep out once to visit the hospital with my Mum, the British Embassy in Phnom Penh have not been in touch with Mum since, and, are not answering her calls.

The Foreign Office have not been in touch with us since I called them Saturday morning to ask for an emergency loan given our extremely difficult circumstances, a loan that my Mum would pay back after remortaging her house. They refused.

We are a standard British Family, just like any other Family. Yet, the British Government expect us to deal with a highly complicated and extremely serious medical emergency 6280 miles way all on our own. 

We would like to emphasise that all scans, treatments, ambulance; everything done, is going to come as much as possible right out of our own pocket. We are not wealthy.  

My Mum is remortgaging her house to pay for Charles's treatment.  

We have now received quotations for repatriation. These range from £ 35 000 to £ 105 000 and are subject too how able Charles is to be moved. 

Any amount of donation you could give would be amazing and very helpful.  In the event of us locating a travel insurance or enough savings to cover repatriation, we will gladly fully reimburse you for your donation. Anything would be most appreciated.
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Thank You Everyone for your Patience.

This update is long, long overdue, however, we have needed a little time since Charles, Quynh & Mum got home too re-connect as a Family under these new circumstances. We wouldnt have gotten them home without you, Thank You again for bearing with us these last few weeks.

Charles' condition has improved in the weeks since his return. The bed sores on his skin have nearly healed, he is no longer in Intensive Care, he is much more alert. His body is moved on a regular basis and he sits up for a portion of the day to strengthen his core. He is also expresses a lot of emotion, given his situation, understandable. He has also been fitted for a specially adapted wheelchair. The staff at Blackpool Victoria are simply amazing and its touching to watch how they go about their job caring for our brother, in such an empathic and gentle manner. Mum visits every day. Quynh, Lyndsay and I as much as we all can. Charles has also been blessed with some absolutely brilliant friends & family who have provided so much support.

Unfortunately, Charles has also suffered a number of set backs. He is extremely susceptible to bugs, a recent chest infection has really set him back, but he fights and we simply have to give him time to recover as much as he possibly can.

Lyndsay has been reading aloud to Charles Kate Allett's book, Running Free: Breaking Out from Locked-in Syndrome. If you havent heard of the brilliant Kate, who like Charles suffered a brainstem stroke. Here is her brilliant TEDtalk

She so aptly describes how she felt on waking up in her own paralysed body, which felt like a coffin. Hearing Consultants at the end of her bed advising her Husband she would be better off dead in her situation. But she also describes how she mastered the art of swearing with her eyes, which, we think Charles is getting good at too. This is amazing women ran a marathon 21 months after suffering a very similar stroke to Charles.

https://www.youtube.com/watco h?v=-1E1x2fE6Mg

Its so important for Charles to know that he is not alone, that he can beat this. That he is not the first survivor of Locked-In syndrome and, sadly, wont be the last. That we need to help him find his voice and find his strength.

With all the support and medical advancements available today, we want to help Charles find the key to unlock his "Locked-In" diagnosis. So, we have decided to keep this fund alive, we have changed the title and removed it from the medical emergency section. We dont have an exact plan yet, however there are so many considerations we need to make on Charles' behalf in the coming months.

Charles will require hundreds of hours of neuro-, physical and psychological rehabilitation/support.
He may require a possible computer-based communication system if he cannot find his voice independently. Mum's house may need adaptions to ensure accessibility. Charles' future independence may also be helped enormously by a service dog. There are so many options that may or may not help in the future.

However, we would like to emphasise - we are still hopeful that he makes a full recovery and none of this equipment will be required ! But, its just to early right now to tell. We dont have a price as we want to give Charles time to recover as much as he possibly can.
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Good Morning Everyone

Another little note regarding Charles' progress.

Just over a week ago Charles was admitted into the amazing care of the ICU Team at Blackpool Victoria.

The sores on his skin from lying constantly in the same position for nearly five weeks are healing. Charles is moved every two hours and he sits upright for a few hours a day to help strengthen his muscles.

Antibiotics have cleared his infections.

He is bright and alert and since yesterday has also started laughing, silently, but still! Lyndsay sharing embarrassing family photos that we had all completely forgotten.

His tracheostomy is still in, but, it has been changed to allow him to breathe and swallow independently (this is really important in order for Charles to regain a good quality of life).

Mum visits daily from 2 until 7:30 pm.

Both the ICU Consultant & Head of the Stroke unit have advised that, due to the location of both blood clots, they strongly suspect Charles is experiencing Locked In syndrome. This is extremely distressing as it means Charles is fully aware of everything around, yet, is only able to move his eyelids.

Here an article from a locked in survivor, describing Locked In syndrome, from the inside out. https://www.theguardian.com/world/2012/aug/07/locked-in-syndrome-richard-marsh

We have been advised that these next weeks are critical, Charles is by no means out of the woods yet.

Charles is young and he is stong. No-one in the World completely understands how our brains work and their capacity to heal. Charles' limbs react to touch and, alongside the dotors, we are figuring out ways to help Charles climb out of his paralysis. Our brains are wider than the sky and deeper than the sea.

We are in the process of reaching out to Locked In survivors and leading Neurologists and different experts to acquire more knowledge about different treatment types available. Please stay tuned for updates and keep our Little Brother in your thoughts and prayers.

We would never have gotten this far without you. Thank You once again from,

Charles, Esther (our Mum), Quynh (Charles' Partner), Lyndsay & I xxx
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Firstly, our sincere apologies for the lack of updates these past few days.

Its been quite a roller coaster. But, Charles was admitted into the care of the staff at Blackpool Victoria last Thursday afternoon!

We were advised Charles was, definitely, fit to fly last Tuesday. The airline confirmed late afternoon Wednesday they could accept Charles as a patient a few hours later on their night flight from Bangkok to Manchester, via Dubai. Charles had a section of the airplane, accompanied by a Nurse & Doctor. Mum & Charles' Girlfriend were also on board. Our Family was finally reunited late last week.

Please do accept our apologies for the delay in writing this update. We were sat on tenterhooks last week regarding Charles' Return. It has been an incredibly stressful few weeks. We needed a few days to switch off, to comprehend what has happened to Charles and reconnect as a Family.

The Doctors at Blackpool Victoria have advised us that the next two weeks are critical. His Tracheostomy will be removed this week. Charles has been incredibly strong so far and we are hopeful that, now in the excellent care of the NHS, he will be able to make good progress.

Due to your incredible kindness and generousity, you have helped fund the following:

Camlette Hospital, Phnom Penh
£ 18 000
Private Air Ambulance from Phnom Penh to Bangkok
£ 17 500
Private Hospital Care in Bangkok
£ 8 500
Commercial Repartriation
£ 35 000

Charles would not be home without You. Thank You.

Charles has a long and hard journey ahead, with hundreds of hours of rehabilitation needed, to ensure that he has a decent quality of Life. He will have bumps along the way, he has come so far. We believe his strength of mind and character, coupled with the excellent care available in the UK, will help him overcome this truely dibilitating disease.

We will update you of his progress these next few days. Please keep Charles in your Thoughts and Prayers.

Very Best Wishes, Esther, Lyndsay & Jennifer xx
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Good Morning,

Today is a day of full of hope & positive news regarding Charles. We also have an appeal to Charles' many Friends who are watching this page and reading these updates.

Charles contracted two avoidable infections last week in Phnom Penh, most likely due to the poor hygenic standards. His antibiotics were not helping and we were extremely worried.

We organised a team of independent, Cambodian & English speaking, medical professionals to visit Charles at Camlette hospital. After this visit it was clear that the only way to get him home was to transfer him to a hospital in Bangkok, specialised in getting Patient's stable for long commerical flights.

Charles was air lifted to a specialist hospital in Bangkok on Sunday. We were able to pay for this flight and the, huge, deposit for the hospital upfront with the funds you have so kindly donated via this page.

We hope that within 3 - 4 days, Charles's condition will be stable enough for the long flight home via an ambulance and medical team, on a commercial flight.

We are hopeful.

Your generousity for our little Brother has helped us get this far!

And here an appeal to Charles Friend's and just those who would like to wish him well. Charles is currently unable to move or verbally express himself, yet, his eyes are so very much alive. Talking with him, you can clearly see that he understands EVERYTHING around him. May I kindly ask his friends a favour ? He needs to hear the voices of his friends and the many people, who are fighting his corner right now, if you are able to, can I ask you to send a voice recording of a wee message to Charles. Just of support, or maybe of a past memory together or even like his good mate Brian, just to tell him he owes you a pint once he's home !

If you can send them via whatsapp to me on 07468 268 715, I will forward them onto Mum to playback to Charles today.

Thank You so much, Charles' Mum Esther & Sisters Lyndsay & Jennifer xxx
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