To my regular readers, I apologise for this post which is completely off-topic! I have put up a crowd funding page to try to raise funding to get my granddaughter, Amy, much needed rehabilitation treatment. I would not have posted it here as a blog if it wasn’t so important. There follows a brief account of an unbelievable series of events, leading to the fundraising.
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| Amy before she became ill |
In the beginning my daughter, Jo (Amy’s Mum), was diagnosed with stage 4 Lymphoma in November 2017, and was in hospital for many months having chemotherapy, and then 3 weeks of radiotherapy. She, thankfully, finally went into remission in September 2018.
While Jo was an in-patient at UHCW, (University Hospital, Coventry) Amy became unwell with croup, but it was a bad case - and this is where her nightmare began, she got admitted into hospital in December 2017, and ended up in an induced coma.
Then the Doctor didn't insert her cannula correctly and from that she got an infection in her left hand where the cannula had been, and she developed CRPS (Complex Regional Pain Syndrome), at the time her mum was having chemotherapy. In fact, they were in the next ward to each other at one time!
CRPS is an extremely painful disease which has affected her left arm. The pain is present 24/7 and is said to be worse than child birth or amputation. Drugs do not help to dull the pain and although there are many people diagnosed with this disease there is currently no cure. However some patients can be helped to live with the problem and as Amy is such a fighter, we think she can benefit from the treatment on offer at the STEPS clinic.
The CRPS gave Amy a severe intolerance to dairy products, which have caused her to have several anaphylactic shocks when accidentally given cheese, or milk. She has to have two loaded epinephrine hypodermics (epipens) within reach at all times.
CRPS is an extremely painful disease which has affected her left arm. The pain is present 24/7 and is said to be worse than child birth or amputation. Drugs do not help to dull the pain and although there are many people diagnosed with this disease there is currently no cure. However some patients can be helped to live with the problem and as Amy is such a fighter, we think she can benefit from the treatment on offer at the STEPS clinic.
The CRPS gave Amy a severe intolerance to dairy products, which have caused her to have several anaphylactic shocks when accidentally given cheese, or milk. She has to have two loaded epinephrine hypodermics (epipens) within reach at all times.
Amy has been in and out of hospital since December 2017, and presently she has been an in-patient since September 2018, not even coming out at Christmas.
She was a Primary School teacher, with a first class honours degree and she loved her job. But she hasn’t worked now since December 2017, it’s absolutely heartbreaking for her family to see her this way.
In Amy’s own words:-
‘I am fighting a few debilitating and very painful conditions, which are unfortunately extremely difficult to treat. The past 18 months have been terrible; with my Mum having stage 4 cancer (thankfully in remission now) and me suffering from multiple disabling conditions. I have mostly been in hospital over this time, spending the majority of it, including now, bed bound in hospital as I can’t use my legs, sit up independently or use my left arm. My CRPS also sadly spread to my internal organs; meaning that I find it extremely difficult to take food and liquids orally, sometimes including my own saliva, so I depend on tube feeding the majority of the time.
Unfortunately the hospital that I’m currently in doesn’t have the skills and are not equipped to help me 😢. I have been referred to specialist NHS hospitals but the waiting lists can take 1-2 years. We are very scared that if I wait that long, I will just continue to get worse over that time.’
As the family are very worried at the prospect of waiting 1 to 2 years for specialist help, we have set up a Crowd Funding page to help fund private care at STEPS, in Sheffield, who have an excellent record in the treatment Amy so desperately needs to get her walking again. Currently, it will cost approx. £5,000 per week. I don’t know how long she will be in there, depends on how well she does, I suppose.
These are the links to two sites, there are others posted by Amy on her crowd funding page:-
Thank you for reading this and if you can recommend a contact or share it on facebook or even make a donation, no matter how small, we would be extremely grateful.
This is a quick update and probably the only one l'll do here, until Amy starts her treatment. In seven days we have raised over £4000, a long way from the £100,000 she needs, but we have been inundated with requests for interviews from newspapers, magazines and radio stations. We have signed with a press agency and they will posting articles and photos etc to every paper, magazine and news media outlet in the country and even some abroad, on wednesday next week. Hopefully the total will then climb quickly towards the £100,000.
This is a quick update and probably the only one l'll do here, until Amy starts her treatment. In seven days we have raised over £4000, a long way from the £100,000 she needs, but we have been inundated with requests for interviews from newspapers, magazines and radio stations. We have signed with a press agency and they will posting articles and photos etc to every paper, magazine and news media outlet in the country and even some abroad, on wednesday next week. Hopefully the total will then climb quickly towards the £100,000.
Kind regards
John Collins
Thank you very much Marco for your kind email.
ReplyDeleteJC
Sounds like Amy was a victim of medical malpractice by the "doctor" that did not install the cannula properly in her hand which resulted in her getting CRPS. Maybe if he and his hospital know that you're ready to sue him for malpractice, they will make sure she gets into that NHS specialist hospital as quickly as possible so she can get the treatment to correct his medical mistake!
ReplyDeleteThanks for the advice anon. We have undertaken that route, but it’s a long and arduous task, and although they might make a payout in the end, it might be too late for Amy. We are using ‘no win - no fee’ solicitors and they think we have good grounds for a successful claim but they warned us it could take years before agreement is reached.
DeleteJC
If you should watch the video of Amy's dog visiting her in hospital, you might be interested to note his name - she called him Bessler'! Amy is fully supportive of my efforts to get Bessler's achievenents recognised and she named her Hungarian Vizsla after him.
ReplyDeleteJC
Dear John Collins,
ReplyDeleteMaybe if you could get your wheel running, and get some money for it, it would pay for the help that she needs--------------------
Sam Peppiatt
Yes, I’ve thought that for several months, but with Amy’s health getting worse, time is running out. Even if I finished tomorrow, getting financial reward will take time, something we don’t have. The STEPS rehab centre is recognised as one of the best for Amy’s problems, but the only way to get in quickly is to privately fund it. With both Amy and her mother in hospital at the same time, we spent a lot of time at the hospital and not working on the wheel. So we set up a crowd funding page, contacted TV and newspaper and contacts of all the people we know. Fingers crossed we will get enough to have Amy treatedcsuccessfully.
DeleteJC
Sending my sympathy and a few.. Best wishes!!
ReplyDeleteØR
If the wording was not proper in English, I excuse. I wish for a speedy recovery! Stay focused and keep the spirit as high as possible!
DeleteThank you so much, Øystein, it means so much to Amy and her family and of cousre we grandparents.
DeleteJC
I see my donation went through on the second attempt (extreme levels of internet censorship of many things here in New Zealand at present). All best wishes for Amy.
ReplyDeleteThank you arktos1001, all donations gratefully accepted. I cannot tell which was yours if it was anonymous, but nevertheless we thank you.
DeleteJC
Was £50 donation.
DeleteFound it. Thank you so much, you have been very generous!
DeleteJC
I believe she is going to recover very soon John.
ReplyDeleteJohn, I see, although Bessler has been around you all these years, you chose not asking him about the solution? :P
Thank you yellow, I’m so grateful. I’m going to add an update on the to the blog tomorrow to provide info on our progress.
DeleteJC
Hello, John Collins,
ReplyDeleteit well acts to read that you have received up to now already so much support from so many people and the media. I myself have had a look at all videos of Warrior Princess on YT and with my modest English most tries to understand. However, it is to be seen also good that Amy has not forgotten her humor and hopefully never again thinks also in from her mentioned suicide attempts.
Their videos have earned everybody a Like, comments because of my missing knowledge of English I rather save.
The best wishes, that Amy soon again becomes painless and can stand on her own legs,
sends Marco Z.
Thanks again Marco. This crowdfunding effort has really cheered her up and she at last believes she might be getting some good treatment.
DeleteJC
John I think it's great that the media will now start to spread Amy's story. There is a good reason now for her to be full of hope and I wish you and your family all the best out of that development.
ReplyDeleteZhyyra
Thank you Zhyyra, you are very kind. The first article may be coming into print on wednesday this week, so we hope to get more donations soon.
DeleteJC