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Daz’s Story

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On April 28th 2017 at 48 years old, Darren Leith was rushed to hospital after what we thought was some kind of seizure. He was put into an induced coma in the ICU. After lots of test, doctors were still unsure what had caused the ‘seizure’ or what was wrong with him, a stroke and brain haemorrhage were both ruled out as nothing was showing on scans. Upon coming out of the coma, it was becoming more prominent that Daz was not responding as a normal patient should when waking up. He was awake but was only able to move his eyes up and down and was responding via eye movement when asked. A specialist was called in to have a look at him.

After speaking to doctors and looking at his notes and scans, the specialist seemed to know what was wrong. Daz had suffered a huge and rare brainstem stroke, which was not clearly noticeable on the scans as it’s at the very base of the brain. The brainstem sits just above the spinal cord and controls speech, breathing, body temperature and impulses sent from the brain to various body parts. We all need the brainstem to function for survival, making a brainstem stroke life threatening. 

The specialist diagnosed Daz with Locked-in Syndrome as a result of the stroke. Only 1% of stroke victims are left with this condition. This neuro specialist had only ever seen the condition once before, and it wasn’t in Barrow. It meant the way we saw him after coming out of the coma would be how he would be for the foreseeable. This is complete paralysis of all voluntary movements of the body except vertical eye movement which would be his only way of communicating (look up for ‘yes’ and down for ‘no’). There is no treatment or cure for the condition, we can only hope Daz can make some kind of recovery.

Daz’s cognitive part of his brain is unaffected, meaning he is still himself, he knows what’s going on around him, he can still think and reason. He still feels touch, pain, itches etc. He is as the name states, ‘locked’ inside his body.  Due to the extent of the condition, Daz was offered a DNR after the diagnosis. He looked down, he wanted to fight it, so we’re fighting it with him.  

To read about brainstem strokes;

https://www.strokeassociation.org/en/about-stroke/types-of-stroke/brain-stem-stroke

To read about Locked-in Syndrome; 

https://rarediseases.org/rare-diseases/locked-in-syndrome/ 

Since the diagnosis, Daz has spent the last 2 years in hospitals or rehabilitation centres. He is currently in Southport, 100 miles away from home at a Neuro-rehabilitation centre receiving care and therapy in hope he can regain any sort of movement and/or better communication.


Partner Kelly and daughters Kirsten and Shannon visit every week but we cannot see him as often as we would like. Kelly and Daz have an 11 year old son, Connor, she has to take care of with the help of Daz’s step children, Mark and Jamie. And Kirsten and Shannon both work full time. Although he clearly appreciates the visits, 2 years away from home and his family is a very very long time, it has taken its toll and he wants to come home!! He is missing out on Connor growing up, he misses his family and friends and he needs the best quality of life we can give him. 

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Daz has gained some minor movement in his fingers and wrists and his head has become stronger. He is now able to shake his head for ‘no’ but continues to look up for ‘yes’. This has allowed us to use his spell board a lot better. Recently he is spelling out sentences more clear and he has used the spell board to ask to come home frequently, along with the occasional insult! As you can see he hasn’t lost his sense of humour! 

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We started the the process of trying to get him home a while ago but have hit some obstacles along the way. As his condition requires a mass amount of personal care it’s quite hard. The council won’t provide accommodation yet as there is a waiting list and there is nothing suitable for Daz’s complex needs. The council have said that we would be best off finding our own accommodation for him. This is for obvious reasons very difficult. We cannot privately rent a property as no landlord would allow us to make the adaptations Daz needs so our only other option is to buy a suitable and adaptable properly for Daz, Kelly and Connor to live in. 

We are currently in the process of selling Daz’s own house, the money from this will be going towards a new home for him. We have already viewed a suitable properly within our price range but we will still need funds for adaptations, renovations and equipment for him to use. Some of what we need will be funded by social services but not everything therefore all funds from this page will go towards the rest.

We hope this page will help us achieve this and help us bring him home where he belongs!!! 

Any donations are more than appreciated and we would like to thank everyone in advance for their support! 

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Donations ()

  • Tina Williams 
    • £25 
    • 2 mos
  • michelle walker 
    • £302 
    • 3 mos
  • Tina Williams 
    • £10 
    • 3 mos
  • Angie Clarke 
    • £5 
    • 3 mos
  • Hazel Sankey 
    • £5 
    • 3 mos
See all

Fundraising team (3)

Kirsten Leith 
Organizer
Barrow-in-Furness, North West England, United Kingdom
Kelly Denise Freshwater 
Team member
Shannon Leith 
Team member
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