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Sophie - Great News

BobBob
edited January 1970 in Announcements
Just received the from Karen - Sophe's mum:<br /><br />Hi Bob,<br /><br />Thanks so much for asking how we are.<br /><br />Things are looking more hopeful than they have in a very long time.  A long story but Sophie was finally admitted to a neurological rehabilitation Unit up in Chester just before Christmas which has been a huge relief to us as the situation had become so severe we were unable to care for her properly at home.<br /><br />Progress is exceedingly slow and Sophie is struggling hugely being so far away from home but we have to trust this is the right thing for her.  We try to visit her once a week even though it is a very long journey.  <br /><br />I hope you and your family are doing well.<br /><br />Lots of love,<br />Karen xxxx
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Comments

  • Great News,and thanks for letting us know Bob.
  • [member=2616]witchone[/member]    [member=2608]janga.stud[/member] <br /><br />I know this will make your day.
  • Great news Bob. Such a brave young lady who suffers more than her fair share.
  • Absolutely Moz.  I think this is where Sophie is at the momeny:<br /><br /> HERE <br /><br />This must still be quite a strain on Karen.  The journey from Oxford to Chester is around 170 miles.
  • Brilliant news Bob. Thanks for keeping us posted. It is a long journey but hopefully Karen and the family will see improvements even slight from one week to the next.
  • That's great news Bob. Sounds like a long trip each week for Karen but hopefully there will be some improvement in Sophie's condition as time goes by. Thanks for keeping us posted too.  :)
  • [member=671]Bob[/member]  Thanks so much for letting me know about Sophie.... such good news. :)  Haven't been around for a few days, so only just seen this.
  • Emails between myself and Karen:<br /><br />
    Hi Karen,<br /><br />So pleased to hear that; it must be a great relief for you.  Just a pity it couldn't be somewhere a bit closer.<br /><br />I take it that it will be St Cyril's Rehabilitation Unit?  I have two friends who live in Chester and, as it happens, they are both doctors.  <br />They speak very highly of that unit.<br /><br />The members of the photo forum send there very best wishes as do I and please give our love to Sophie when you next see her.<br /><br />Love and best wishes<br /><br />Bob
    <br /><br />
    Hi Bob,<br /><br />Thanks for your kind words and thank the photo forum for their good wishes, I will pass them on to Sophie.  She will never forget everyone’s kindness to her.<br /><br />Yes she is at St Cyril’s!  How interesting that you have friends who are doctors that speak highly of the place.  That is really good to hear.  Overall we are very pleased with their dedication in trying to help Sophie improve and recover. <br /><br />We had an unbelievable struggle to get Sophie an appropriate hospital admission despite the severe situation we were in and her life was literally at risk, it was awful.  The NHS had no provision anywhere for her complex situation despite her GP doing her very best to access appropriate inpatient care, she was beside herself with worry.  We did research ourselves and it was us that found that St Cyril’s take patients with very severe ME and put it forward as an option and thankfully after a battle funding was agreed or I don’t know what we would have done.  They were literally the only hospital in the country that agreed to take her ☹<br /><br />We are off to see her tomorrow, it is a 3 hour journey each way but at least she is safe now.<br /><br />Take care and many thanks,<br />Karen xxxx
    <br />
  • Hi Bob.  That is good to hear.  Just a shame it's such a long long way away.  :)
  • Yes Steve, six hours there and back is a hell of a trek.  But it's plain to see that Karen is very much happier.  I was really rather afraid to contact her in case the news was the worst but Kathy persuaded me.
  • [member=2616]witchone[/member]    [member=2608]janga.stud[/member]
  • I made a comment on your FB page, Bob, just to see if others would be interested in the poor lasses condition. I nearly suggested they get in touch with you to elaborate but then thought you might not thank me for the suggestion. I don't know what Sophie's family circumstances are but it must be a strain on their budget. What would you say to raising a few pennies toward the costs they must certainly incur. All I ask is that you don't ask me to organise it. :) The Album(s?) was/were a brilliant gesture and showed what a caring bunch we have on here.
  • An excellent idea Moz and one that I had considered but I was not sure how it would be received.  I wonder what other members might think?
  • on 1441616850:
    <br />I made a comment on your FB page, Bob, just to see if others would be interested in the poor lasses condition. I nearly suggested they get in touch with you to elaborate but then thought you might not thank me for the suggestion. I don't know what Sophie's family circumstances are but it must be a strain on their budget. What would you say to raising a few pennies toward the costs they must certainly incur. All I ask is that you don't ask me to organise it. :) The Album(s?) was/were a brilliant gesture and showed what a caring bunch we have on here. <br />
    <br /><br />
    on 1441617039:
    <br />An excellent idea Moz and one that I had considered but I was not sure how it would be received.  I wonder what other members might think?<br />
    <br /><br /><br />[member=266]ahab[/member] Great idea Moz.  I'M IN!!!      :)
  • I could start a 'Just Giving' page which would open the way to receive donations not only from this community but from friends and family too.
  • on 1441617911:
    <br />I could start a 'Just Giving' page which would open the way to receive donations not only from this community but from friends and family too.<br />
    <br /><br />Sounds like a plan Bob.  :-*
  • If it's well received perhaps we could introduce it to a wider audience such as FB but this would obviously need far more safeguards than we would need on here and may well not be the ideal platform, plus we don't know how well it would be received by Sophie's family.
  • I'll do some investigating on how it works and who can see it Moz.    I think I should probably contact Karen and put it to her before we go any further with it.
  • Probably wise to contact Karen before going further Bob
  • This is what I propose sending to Karen.  They are visiting Sophie today so I won't sent it 'till tomorrow.  Any amendments?<br /><br />Hi Karen, <br /><br /> I copied your reply to the photo forum and the fact that you now have a weekly six hour journey has raised some eyebrows and caused no little concern.  While it is a huge improvement on your previous circumstances it must be a bit of a drain financially.  Several members have asked if we can help at all and I came up with the idea of raising a 'Just Giving' page to assist with your expences.  Obviously we would do nothing without your approval but we would really like to help if it is at all possible.<br /><br />If you agree then I will raise the page and open it to the forum, friends and family and the LASG forum too.<br /><br />We do hope that you'll agree to this and it is meant with every good intention.<br /><br />Love and best wishes<br /><br />Bob
  • Seems fine to me Bob. Hope Karen agrees but the choice is hers.
  • It's just occurred to me that there are a lot of new members on here now who may not have heard of Sophie.  <br /><br />I first got to know of Sophie through the Latex Allergy Support Group forum which I run.  She was then a young girl suffering from Type 1 Latex Allergy (which means that any contact with latex results in anaphylactic shock) and very sever MS.  She was bedridden and fed through a tube.  <br /><br />She has been in and out of hospital all her life.  Unfortunately hospitals have often released her too soon which has put enormous pressure on her mum, Karen when she has had to care for her at home.<br /><br />I used to send Sophie pictures of my dogs as she loves animals and then it occured to me that the forum might be able to supply photos of animals to make up a book and, so far, we have made three books for Sophie and, although she is usually too weak to hold the book herself, Karan sits with her and turns the pages and Sophie loves them.<br /><br />Sophie has now been admitted, on a long term basis to a neurological rehabilitation unit up in Chester, the only one in the country equipped to take her.  Unfortunately, it means a six hour weekly round trip for Karen and her husband.<br /><br />I would appreciate the views of some other members please. :)
  • Please; somebody say something if it's only goodbye. :)
  • Sorry Bob I've just noticed the thread but haven't had a chance to read it but will
  • A "Just Giving" page would be great Bob, and it could also be opened to a wider audience if the family agree.
  • There doesn't seem to be any great enthusiasm on the forum for this.  I've only heard three people support it so I don't think I can go ahead with it. :(
  • Find the response surprising considering how supportive they were of the Albums. Maybe they're on holiday Bob. Give it a little while longer.
  • I have heard privately from another member Moz so I'll give it a couple of weeks and see if there's enough support.
  • Hi Bob.... I've just got back from a short [much needed] break and just seen this.  I am SO interested in helping financially, even though it may be in a small way.  But ..... if many could give a small amount, it would make such a difference.  Hope you can get some support for this worthy cause.
  • Many thanks Sheila.  We'll wait and see what other support we have.
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