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
