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£3,770raised of £5,000 target by 129 supporters

Weʼre raising £5,000 to diagnose and treat Michael's debilitating, chronic illness.

10 days to go

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Story

On the 9th May 2017, our lives changed. Michael, a normal 32 year old man, my husband and father of our two little humans was struck down by chronic pain.

Our journey since then has been a long and difficult one. ….

We live in Aberdeenshire and have two children, Alba has just turned 3 and Arran is 9 months old. I am currently on maternity leave from Primary Teaching and at the start of the year we were enjoying the first few months of being a new family of 4 and the love and chaos that brings.

We have since spent the last 5 months searching for answers for Michael’s debilitating pain in his chest. Michael had suffered with reflux symptoms as a young adult and in 2011 he had a Fundoplication operation for this at Aberdeen Royal Infirmary. Since then Michael has lived a normal life, although he did experience spells of severe IBS, what we presume was a side effect of the operation. On 9th May, Michael was driving home from work when he experienced a severe pain in his throat, which late moved to his chest. We called an ambulance and he was taken to A & E. Over the next few months Michael had 3 hospital admissions where tests were done to try and work out the cause of the symptoms. Michael has had an endoscopy, barium swallow test, manometry test, CT scan and ultrasound in Aberdeen. Michael’s consultant couldn’t see any obvious problems and on 7th September he decided to do exploratory surgery to hopefully find a cause. We were so hopeful that this would be the end of the pain. The surgeon decided to undo Michael's Fundoplication wrap but did not discover any problems. As the weeks went by and Michael recovered from surgery we were devastated to discover his original pain had not subsided. His day to day symptoms include; sharp shooting pains, constant dull pain, severe pain after eating, extreme weight loss and these have led to fainting spells to add to the mix!

Michael currently has no quality of life, he isn’t able to care for himself, let alone his children. He isn’t able to walk any further than around the house, meaning he requires a wheelchair for anything further. He isn’t able to prepare his own meals or go out for a walk. All things we take for granted. Michael has barely been able to hold, comfort, carry, or play with Arran in his short life so far. As a very active and equal husband and Father this has been horrendously frustrating and difficult for Michael.

We have spent months going to doctor’s appointments, hospital appointment, private consultations in Aberdeen and trying various diets including a puree diet for months.

We have recently been researching two illnesses which are both vascular related; MALS (Median Arcuate Ligament Syndrome) and SMAS (Superior Mesenteric Artery Syndrome. Last week we spent thousands of pounds travelling to London to see a private specialist and pay for a doppler ultra sound to try to gain a diagnosis. During that ultrasound the sonographer was unable to find the arteries needed to diagnose either of these conditions. He therefore needs further tests. While we can ask for these on the NHS, it is extremely slow and waiting time is months at a time for each test. We are very eager to get these tests carried out and get them sent to the specialist consultant in London who would be willing to look at them and possibly be able to diagnose an illness. These conditions are so specialist that Michael’s consultant in Aberdeen hadn’t heard of either of these. It is extremely important that a specialist looks at the imaging, as they know what to look for, they can be easily missed by a Doctor who has not seen these conditions before.

We are desperate to get our lives back to normal and give Michael relief from the constant pain and a better quality of life. It is extremely upsetting for me, as well as our extended family, watching Michael suffer in the way he is. Until a loved one is struck down by an illness, I don’t think we realise how precious our health is, our most priceless possession. Unfortunately we have had a frustratingly slow and extremely disappointing experience with the NHS, they are failing us, and it seems money talks. This money would ensure we could get Michael the tests he needs quickly, possibly within a couple of weeks and also our ultimate goal of some money towards treatment, although we do hope to use the NHS if we can as treatment could cost more than £10,000. Unfortunately our savings have now been spent on the testing and consultation we have already had to get privately. Michael has been out of work since May. I return to work after being on maternity leave this month and will be paying for childcare as Michael is unable to care for them. Michael is desperate to be fit and well, back to work, socialising with friends and spending time with his children playing on the floor and throwing them in the air. Alba is so aware of her Daddy’s illness and constantly talks about what Daddy will do when he’s all better, draws Daddy's sore bits and tells family nembers they have to be careful around him. I wish I could give her some positive news.

This is our last resort.

We miss the real Michael and Daddy.

We are all too aware of how valuable every penny is and therefore would be hugely grateful for anything anyone can give no matter how small.

Ruth McFarlane

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Updates

4

  • Ruth McFarlane6 months ago
    Ruth McFarlane

    Ruth McFarlane

    6 months ago

    The diagnosis that has been suggested is gastroparesis. So we are obviously doing as much research as possible and really trying to look for triggers. Michael is also on a strict diet from dietician. We're not convinced that it is this alone as the chest pain is still so severe at times. We managed to get to Lossiemouth for a little caravan holiday last weekend. Michael was able to join in with way more than he's managed in the last year. Although obviously still wasn't able to walk too far, carry anything and needed plenty rest.

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  • Ruth McFarlane6 months ago
    Ruth McFarlane

    Ruth McFarlane

    6 months ago

    Michael has had 5 separate appointments with the private GI consultant who has been excellent. This comes in at around £500. We paid £130 for a private dietician appointment. £216 for specialist blood testing. £250 for a SIBO breath test. 2 acupuncture appointments with different people at around £50 each. At the moment Michael has good days and bad. He seems to have a bad flare up every week or so. On an up day he may manage to take Alba to nursery, go out for a cuppa, a short walk. On a bad day Michael isn't out of his bed at all.

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  • Ruth McFarlane6 months ago
    Ruth McFarlane

    Ruth McFarlane

    6 months ago

    Update in a few posts as it only allows 500 characters.... Hello! Just wanted to give a little update as we are forever grateful for this money and what it is allowing us to do. We are getting a little closer to a diagnosis for Michael's illness. However it doesn't seem to be as simple as ONE condition. Since I last posted we paid £600 to get pain injections. Which didn't work. We've spent £300 on appointments with the pain management team at Albyn which we weren't able to get on NHS. ......

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10 months ago

Ruth McFarlane started crowdfunding

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Page last updated on: 3/23/2018 4:48 AM

Supporters

129

  • Anonymous

    Anonymous

    Mar 23, 2018

    If you light a lamp for someone else it will brighten your path too.BTO x

    £100.00

  • Lesley Hynds

    Lesley Hynds

    Mar 21, 2018

    £10.00

  • Grace Bambridge

    Grace Bambridge

    Mar 20, 2018

    £20.00

  • Graham King

    Graham King

    Mar 20, 2018

    “All the best” and good luck with the fund raising.

    £30.00

  • Joyce Hay

    Joyce Hay

    Jan 17, 2018

    Every success and loving support

    £20.00

  • Anonymous

    Anonymous

    Dec 24, 2017

    Praying and hoping that you get better soon, Angela

    £30.00

  • Katrina Lewarne

    Katrina Lewarne

    Dec 13, 2017

    Hope you are getting some answers. Good luck love Katrina and Ross xxx

    £25.00

Ruth McFarlane

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Ruth McFarlane

Ruth McFarlane

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