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Medical/assistance dog for Jonathan

£13,865 of £16,000 goal

Raised by 243 people in 20 months
My husband Jonathan is 39 and Daddy to our 2 beautiful young children. Jonathan suffers with a serious and complex combination of Addison's secondary disease and separately diagnosed M.E.

Jonathan's Addison's condition means the pituitary gland in his brain is damaged which means his body doesn't produce cortisol. Cortisol plays a complex role in regulating body functions and is essential for survival. This condition is unpleasant to live with but can quickly become life threatening in hours.

Theoretically his medication should have stabilised him by now and he "should" be leading a normal life. But this hasn't happened. To date the specialists he sees have been unable to explain his symptoms nor his lack of recovery, despite the years of testing and evaluation.

He battles daily with managing his pain and limited mobility, meaning for the most part he's bed bound, unable to manage even being downstairs with his family. He needs full time care and has a low immunity leading to regular battles with infections.

One of the reasons your body needs more cortisol is to cope with an infection. Trying to gage the right amount of cortisol for your body is not a straight forward calculation as it changes as your illness worsens and there is no home test for it. With each infection the risk increases of Jonathan going into a fatal Addison's coma or developing sepsis as his medication masks initial symptoms. It can become fatal within hours.

This risk became a reality last April 2016. Despite following the Addison's medical advice during an infection, Jonathan went to sleep and didn't wake up, instead he went into a coma as his body started to shut down. I found him unconscious, blue and breathing just 3 times a minute. It was the scariest moment of my life as I was unable to move him from the bed to start chest compressions and had to wait for the ambulance crew to arrive. I watched as they struggled to resuscitate him, an air ambulance arriving on a nearby field then in the final moments he regained consciousness and started breathing again. Unfortunately there have been multiple episodes like this as Jonathan is regarded as an "extreme case".

His ill health started in May 2013 when he contracted chicken pox. This initially triggered post viral fatigue leading to full blown M.E. After 18 months of being bed bound with M.E., sleeping 20-22 hours each day, Jonathan started to recover. He returned to work in November 2014 but it was short lived and began catching illness after illness, needing more and more antibiotics. By April 2015 he was collapsing daily, sweating excessively with extreme fatigue that left him feeling barely able to breathe.
Finally in October 2015 he was diagnosed with also having Addison's disease (secondary).

We were initially relieved. Finally we had an explanation for the black outs, the extreme fatigue, loss of limb control, nausea and extreme pain. What was important is that the majority of Addison's patients recover and go on to lead a "normal life".

Upsettingly, Jonathan is in the minority and this elusive recovery hasn't happened.

We are raising money to provide Jonathan with a medical assistance dog for 3 key functions; 1) to detect if his cortisol levels are low, prompting him to take life saving medication, 2) alert someone if he goes into a coma, as initial signs would appear he was simply asleep, and 3) to act as a disabled assistance dog, giving him support during collapses.

A dog suitable for being a medical detection and disability dog are expensive to source, and fully train, as they are not readily available. There are charities which could provide a suitable dog but their waiting lists run into years.

Jonathan needs this dog now.

He lives daily with the fear that he may sleep and not wake up, trying desperately to sleep only during the day when he can be monitored more closely. He's scared of moving about when unsupervised in case he collapses and seriously hurts himself. Simple trips to the toilet can be daunting for him.

Jonathan is my husband of 13 years and Daddy to our 2 children who are 5 & 3 years old.
He's the love of my life and it breaks my heart watching him struggle each day.
It's hard to watch such a strong man be reduced to an existence where he mostly watches or listens to life going on around him. A life where he can't be involved with our family as it's physically too much for him. This includes not being able to join us for dinner, or chase the kids in the garden, or read books at bedtime. We try to bring as many activities to Jonathan as possible, wherever he's resting but the reality is he's usually too exhausted and our animated chatting is overwhelming for him. At their age our kids quiet voices don't last for long!

Until the day he was struck down by this awful condition he hadn't been to the GP in over 20 years. He was a picture of health who laughed at "man flu". Nothing stopped him.
Prior to being ill, Jonathan was a healthy career man who worked tirelessly to be a provider for our family. He was a devoted father and would create the most original fun games for our son to play, spending hours with him, making sure he knew he was the centre of his universe. Involved at every point of family life we knew we were blessed. Jonathan and I were a regular couple, enjoying nights out together and with friends and family.

He was also very physically motivated. Everyone who knows Jonathan knows he has non-standard interests. Those interests were working dogs, climbing mountains and peaks, martial arts and outdoor survival skills. In everything he did he gave 100%. He thrived in being challenged and was like a kid again organising "expeditions" with his friends.
With his conditions, he still gives 100%. He's now an expert on himself. He's researched every aspect of his conditions, physical rehabilitation, medication, the correct diet, supplements, therapies for relaxation and emotional well being. He's tried lots of alternative therapies. And he will continue fighting.

He is a proud and motivated man and I am constantly in awe of his strength to fight and never give up. But he desperately needs a break from this fight.

We are asking for help to allow him to keep fighting...safely.
Despite him being there in body we desperately miss him being more involved in our lives. A medical assistance dog will allow Jonathan to have stop living in fear, have a higher quality of life and take steps towards being more mobile.

Any help you can give to help us reach our target will mean the world to us.
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Update 25
Posted by Nicola Sheldon
11 months ago
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From Jon... the horse’s mouth ...

Good news. After a full day meeting at St Barts in London last Monday they have agreed to take me in and work on me from the 5th Feb from scratch! They are going to go back to grass roots, redo various tests, do lots more that haven’t been considered and work on me from an endocrine and neurologist point of view simultaneously, with some of the best guys in the country looking at me. I can’t afford to get too hopeful, but they seem confident that they will get to the bottom of it. It’s refreshing to speak to people who are excited rather than intimidated to look into my case.

For those who don’t know I’ve been deteriorating badly and have had episodes where my lungs have gone through phases of struggling to function. Naturally this is scary as if it gets worse it will ultimately become fatal. I’m continuing to try to keep my cool, and at least it’s made st Barts arrange to get me in so quickly.

I’m suffering from yesterday’s exertion, collapsing allot, but my spirits are high.

Thanks to everyone who have helped keep me focused and my spirits high. You all know who you are.

Our best wishes to you all x x x
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Update 24
Posted by Nicola Sheldon
12 months ago
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Hi all,
It has been an intense week ... is the nice way to describe it.
Jon was discharged from hospital by the cardiology team. The lead doctor was not only dismissive of Jon’s deteriorating condition but she was downright cruel and suggested the hospital in its entirety has exhausted it’s efforts and Jon is likely to never have a solution. Despite feeling dreadful ill, Jon politely provided a list of avenues and tests which have not been covered but which had been suggested the hospital consultants. The conversation finished with her suggesting to Jon that his condition could be psychosomatic. Her behaviour was inexcusable and I will be logging a complaint. No one should have to suffer from her dismissive attitude. She was ill informed, ill prepared and ill suited to being bedside with any patient.
For those of you who know Jon personally you will testify to how strong, determined, focused and proactive he has been. But that strength can only hold so long. It was an experience he could well have done without and it’s knocked the wind from him quite frankly. He left there with a flea in his ear, a recovery from the norovirus and exhaustion from the lack of rest. It’s not surprising that yesterday we had to call our GP bedside as he had another infection on board...sinus and eye and has been dripping with sweat for the past 3 days.

I am now putting all effort into making Jon’s next 2 London appointments (to see Endocrinology and Neurology) work the best they can. You would be shocked to know how many calls I have had to make to track down the 2 consultants secretaries and ensure tests results from Basildon and Queens hospital are sent to their hospital. They should be sent by the referring consultant but in our 5 years experience it has never happened and we have previously turned up to an empty file.
Jon had been given a date for the London Neurology appointment and on Thursday we were thrilled when we secured an early appointment for Fri 12Jan (today)! Then we had a call late Thursday. The bad news is the appointment had been cancelled. The good news is that the secretary had queried Jon’s file with the consultant, he reviewed his file and saw he was being sent to the wrong team. What we discovered is that the initial appointment is to establish which Neuro sub class needs to work with Jon. I had no idea how many categories of Neurology teams there are. The consultant has decided he needs to see a Neuro-muscular team and so he will booked to see them directly and will skip the initial appointment. We should find out on Monday how soon he will be seen.

We remain forever hopeful

Take care all x x x
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Update 23
Posted by Nicola Sheldon
12 months ago
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Hi All,

It’s day 5 since Jon was admitted into hospital. The usual battles with the Doctors has resumed. Them trying to insist his tests are fine and they are “ happy” for him to go home. Us looking shocked and appalled as Jon collapses in front of them, tremors in his legs, intense leg pain as well as continued double vision and a very long list of other equally worrying symptoms. He’s had bad luck too and caught the norovirus bug going round the hospital and was very unwell for the past 2 days.
The doctors have today agreed to refer him to neurology and he’s awaiting a visit. He should be transferred to a London hospital as by their own admission they have all run out of ideas and Jon continues to confound them.
Let’s hope red tape doesn’t stop this sensible move.

I’ve also had to raise a complaint about the administration of Jon’s medication. When he contracted the norovirus he needed an injectable hydrocortisone to prevent his body going into shock. Despite flagging up that he needs this prescribed on request to the A&E doctor, it wasn’t on his list of medication when he entered on the ward. As such the nurse could do nothing except page an on call doctor. It took 4.5 hrs for a doctor to arrive and for him to be prescribed fluids and the correct medication. This isn’t the first time it’s happened and action is required. Jon was left in unnecessary pain & discomfort, alongside the unnecessary increased risk of his body going into a coma.

Take care all x x
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Update 22
Posted by Nicola Sheldon
12 months ago
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Hi all,

We hope you all had a lovely Christmas and have worked out what to do with all your leftovers :)

On Thursday Jon got his MIBG scan results back. They were negative. It’s bitter sweet news. Obviously we don’t want him to have a tumour requiring an operation but at the same time we are now back to square one. Despite rigorous testing the local consultants at Basildon Hospital have no idea what’s wrong nor why he’s deteriorating.
Jon is being referred to a London hospital to be reviewed by endocrine and neuro specialists. He is now waiting for an appointment, although this could be some weeks.
We are both feeling very frustrated and like the process is slowing down. This is hard to deal with when he feels so awful and each day is so hard to cope.

Today Jon has had another collapse at home but fell against the staircase this time and banged his head. He’s concussed and is being admitted to A&E. Because of his Addison’s disease I gave him an emergency injection of steroids but he’s been too unwell to stay at home. I’m currently waiting for him to be given a bed and until then i have to wait in reception. There were 10 ambulances queuing when he arrived so A&E is extremely busy.
The NHS creaks again !!

X x x
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