Wednesday, August 30, 2006


Hello everyone

I am now back from Glasvegas, but have only managed to see Charlotte for 2 days since i've been back. When we arrived she wasn't too well, and as Rachel mentioned below, it turned out that she had contracted menigitis again. She was very disorientated and was lacking in Oxygen, finding it very difficult to breathe. This was partly because of the silicon bed she has been lying on for the last few weeks, which is great for healing her wounds, but also squashes her shoulders inwards (as you can imagine, she is effectively lying on air, and so she 'sinks' into it). This made the fact that she had fluid in her lungs even more problematic and she will most likely have to be moved from this bed, and nursed whilst lying on her stomach so as she can breathe properly and so she is not putting pressure on the wounds on her back, thus allowing them to heal more effectively.

Charlotte's temperature has been very high for the last few days and we have all been very worried that this was a sign of yet another hit of septicaemia, but she appears to be stabilising now, and is a nice and cool 36.6 (rather than the 38.9 she has been reaching). She is definitely feeling much better, and therefore being more demanding! Mum is coming home tonight and Charlotte will spend the next few days with Dad.


Please come along if you have the time. I have been roped into singing again. Having just had an exam i haven't been practising... at all, so it should be amusing for you, mortifying for me! :)

There will also be scrumptious food and goodies being auctioned off (there is a blog entry detailing the venue/time/price etc but if you need anymore info, email me at and i'll fill you in)

So all is good! and hopefully, getting better now! It's just ridiculous how many times Charlotte has been ill, fingers crossed she is able to carry on healing and take at least 3 steps forward before there are any stumbles!

See you on saturday!

Sophie x

Monday, August 28, 2006

Bank holiday weekend update (25-28th Aug 06)

I'm not sure I'll manage as sterling a job as Soph with the blog update this week but am going to give it my best shot! Sad individual that I am I made some notes each day which I saved into my mobile (basically cheated! so I would remember everything that happened :)))

Myself and Soph received SMS messages from Jayne in the early hours of Saturday morning (3am) informing us that Charlotte had, had a seizure. Post a frantic phone call at 9.30am we raced over to the hospital arriving about 11.30am.

Charlotte had been experiencing really bad headaches and was incredibly itchy and irratable, the doctors were unsure at this time whether she had contracted the bacterial meningitis or she was having a reaction to the anti-sickness drugs.

Her sheet change mid afternoon was a scary experience as Charlotte was struggling to breathe and couldnt take down sufficient of the gas and air, as such she was in incredibly pain and started to go bright red and then very grey, she had another fit whilst they changed her. Her stats were all over the place and the doctor took the call to continue on and post the sheet change they sat her up (well as much as they can in a silicon bath) and her breathing appeared to improve - although it was still very shallow.

We had another scare later in the evening over a couple of hour period between 9pm and 11pm. Charlotte really couldn't breathe properly at all and she got incredibly terrified and it became a catch 22, the more she panicked the worse her breathing got, it was terrifying for us, so god only knows what it must have been like for her! We also had to deal with a huge shortage of experienced nurses over the weekend period - thank god Jayne was in with her as well, as Charlotte puts it so eloquently, I am a real 'pussy' in those situations!! An hour or so later the same thing happened again and Charlotte has spent the remainder of the weekend permanently with an oxygen mask clamped to her face. The hospital ran another chest x-ray post the second episode and they realised that the build of of fluid on her left lung was increasing.

Yesterday (Sunday) Charlotte wasn't feeling well again, the combintaion of being in hospital for weeks, in constant pain and now feeling sick with a mask on her face adding to the situation must be totally cracking her up!! The nurse I spoke to today seemed more adamant that it was Meningitis than a reaction to the anti-sickness drugs but as they arn't sure they need to keep trying to cover both options :(

Jayne was up with Charlotte a couple of times during the night and I left Jayne and Charlotte catching up on some sleep when I left about 1.30am today. Rugger knackered out from a pretty intense physio session and a massage of her legs which was obviously excruciatingly painful, Jayne because its incredibly hard to be at the hospital and not to want to be in with Charlotte and as nice as the staff are the place has a hideous way of swallowing you up and zapping you of all your energy! I could literlly feel myself begin to get re-charged as we hit the North Circ on the way home.....................

Hope you have a better week than weekend girls!!

My love to you both

Rach xxxxxxxxxxxxxxxxxxxxx

Wednesday, August 23, 2006

The web site is up!

So go and check it out, it's good.

I've been away and studying for my exam (which is tomorrow :S) so i've not seen Charlotte for a week. But from what i gather from my mum and Rachel, she is doing well and seems alot happier in herself. She is still feeling sick all the time and so the next big step is to get her eating. Hopefully this will cheer her up as well as get her better.

Not much to report, which is a good thing!

Hope you're all well


x X x

Friday, August 18, 2006


We've decided that as well as a way for people to keep in touch, we are going to make this blog a bit like a diary for Charlotte so she can look back and see how events unfolded. Not sure if she'll be particularly excited about this, but i think it's important that the little things as well as the big things , are noted down because alot of what she's going through will be a blur to her a few months down the line!

So, i'm afraid that means more detail!

Charlotte's skin grafting operation yesterday seemed to go OK, but in the night she started to bleed, which unfortunately reduces the risk of the graft 'taking' to her wound. Because this happened during the night, she didn't get much sleep, and when the nurse woke her up this morning to do her breathing exercises, she grumpily said "I am a human being, human beings need sleep!" It's nice to hear a bit of that Charlotte attitude again!

She is still feeling sick all the time but seems alot brighter after knowing that her wounds are so much better and we can finally say that she is going to be moving in the next 6-8 weeks.

Charlotte's Nanna and Godmother are over to see her today, so that should cheer her up as well!

Thanks again for all the messages and comments everyone is sending, it's really cheering her up.


x X x

Thursday, August 17, 2006

The Great North Run

Even more fundraising!

Every year 'Team Macmillan', a cancer support charity, hold "the world's largest half-marathon" to raise money to provide all kinds of support for those suffering from cancer.

This year, Angela Rose (Charlotte's cousin) and Michael Salisbury will take part in the run. Angela will have a second sponsor form with which she will raise money for Charlotte, and Michael, who has registered as an independant runner, will donate all money he manages to get sponsored, to Charlotte's Trust fund.

Thank You Guys!

Please, please sponsor these two generous and energetic people! Even just a tiny bit will make a difference. OR, if you live in the Newcastle area, why not go along and cheer them on!

To sponsor either Angela or Mike please contact either

angela at :

or sophie at :

Thank you

x X x

Sponsored Walk

This one is for those of you who don't want to run a marathon, but still want to get involved. Go for a walk! AND raise money for Charlotte while you're doing it!

More than anything, this idea, created and organised by two brothers, Steven and James Smith, is a fantastic way to generate support for Charlotte's cause. Get some people to sponsor you, even 10p a mile, and the money will go towards Charlotte's Trust and you will have had an enjoyable day out and some good old fresh air and exercise.

Place: The Grand Union Canal, Paddington

Date: 17th September

Time: TBC

For How Long: 10 Miles (piece of cake!)

Please contact either
or for any more information. I will update this blog as and when i know any more information.

THANK YOU! to Steven and James for organising this for Charlotte, we are all very touched by your generosity.

Sophie x X x

BBQ Fundraising Event. 2nd September 2006

Fundraiser BBQ, 2nd September 2006
£5 a head

The night will include BBQ, Raffle and Auction and Licensed Bar (all payable extras i'm afraid)as well as a DISCO! All proceeds (apart from the bar) will go directly to Charlotte's Trust Fund.

Place: Harrow Sports Gound
Harrow View
Middx HA2 6QQ

Time: 4.00pm - 11.00pm

All the family welcome!

Please contact Shailu on 020 8424 7610 to buy tickets or for more information, or email me at

Thank You

x X x

Acupuncture and Indian head massage.


Firstly, thank you so much for all your messages! I've been sending them in to Charlotte every day (she's been getting about 4 or 5 emails or comments each day) and it's really cheering her up! I expect it's quite easy to feel isolated and forgotton about when you're in hospital for 3 months, but it's nice to know that she has so much support and encouragement, as she starts to get better, this is the time she will need it most.

Charlotte's sickness still hasn't subsided and they think this could be linked to an inflamation of her gut, which is also causing the stomach pains (thankfully no gall stones). She was very pleased to hear yesterday that her wounds on her back are looking considerably better. She will go in to theatre today (infact, she'll be in now, as i write this) to have more skin grafting done on her back, which is good news because the sooner her wounds are covered, the better chance she has of not developing any more infections! And the sooner she'll be home!

One of the surgeons yesterday guestimated 6-8 weeks before Charlotte can be moved nearer to home, which is far less than we had imagined :) It goes to show what a little trooper she is, and also, what an amazing team of doctors and nurses there are at Broomfield! Thank you all so much for taking such good care of Charlotte and not only that, but befriending her and showing her so much emotional support. She absolutely adores you all (even the physios!!!)

Charlotte had acupuncture on Tuesday to try and ease her nausea and an indian head massage which made her feel relaxed and happy. I think it's lovely that those were organised for her, something a bit out of the ordinary is always good in these situations i suppose.

There's not really much else to say today. She's doing well, still very down but she is picking up vibes from mum and the nurses and doctors, that she's doing really well and is definitely on the mend and i think that's giving her a bit more motivation to hang on in there.

I'll keep you posted!

x X x

Tuesday, August 15, 2006

A few pictures of Charlotte when she was little and oh-so cute


Hello again

A few people have asked how they can make a donation towards charlotte's trust fund. We are hoping to have a section on Charlotte's site that will enable people to make a donation by card. Until then, cheques can be made payable to 'Charlotte Robinson Trust' which you can send to

Jayne Robinson
71 The Avenue

Thanks to everyone who has made donations so far, we have a long way to go to get our target £50K, but we are well on our way and every little helps!

x X x

Monday, August 14, 2006

Over the weekend...

Thanks to everyone who left comments on this page. I am so happy to see that people think this blog is a good idea :) I am going to print all comments left for Charlotte and send them to her every week so she can see how much support she has. If you want to send a meesage that will go directly to Charlotte remember you can also write an email to and i will forward on any messages to her. When she starts to get better she will also be able to reply!

I wasn't really sure how to write this blog in a way that would be easy to read and informative enough without being too lengthy (because trust me, i could make it lengthy). So i've decided to write in any information that I would find interesting should i be in a readers position.

I stayed with Charlotte from Thursday, mid-day until Sunday mid-day. When i arrived she had just returned from her shower and was shivering and cold with all her teddies snuggled in around her. She is having showers (where they clean Charlotte's wounds on her legs, hips and back) every other day as the pseudomonas bug that caused her septicaemia outbreak a few weeks ago, is still present in her wounds. This means that Charlotte is still 'on the tight-rope', at the risk of developing septicaemia again. However, she has been fighting it for long enough now for us to be able to say that she is building up some resistance to it and the bug is staying in her wounds and not entering her blood.

She warmed up slowly but was very sleepy for the rest of the day and only woke up in stops and starts to ask me to sponge her down with icy water. Even though her temperature is not increasing (she has been a stable 37.0/37.1 all weekend) she keeps getting hot flushes which the doctors think is linked to her constant nausea. The poor thing has intense nausea day in and day out and is sick every 4 or 5 hours.

Friday was pretty much the same except she started to complain of stomach pain. This pain made breathing very difficult and she started to breathe quicker and more shallow. The doctors have um-ed and ar-ed and now think that she may have gall stones. Not very pleasant for her. This isn't definite yet though, i will let you know as soon as we know.

On Saturday she had a 'relaxing' day where she had no shower or sheet change and was left alone in terms of being tampered with by doctors and nurses. Whereas Thursday and Friday she was sleepy and appearing very down and apathetic, on Saturday she seemed to perk up a little and while watching 'Bruce Almighty' she even managed a few smiles! It's been so long since i've seen any sparkle in her eye i could have cried with happiness!

I haven't seen her wounds for some time, but the doctors tell us that although her back is doing much better, her bottom is not so great and the wounds are very deep. We don't know what this means for her long term recovery yet, we just have to wait and see and hope that she heals better.

Not much to report this weekend, i hope this is the kind of information that will help you feel a little more in touch with what is going on, as i know it's hard when you're not here as you feel so far away.

I hope you are all well, and if you have any suggestions on how to make this blog more informative for you, just let me know

Love to you all, Sophie x X x

Wednesday, August 09, 2006

LISTEN UP!: Another fundraiser on the horizon.

If you didn't get a chance to come along to the last fundraiser... come to this one!

On Saturday the 2nd of September there will be a fundraising event for Charlotte held at

The Kodak Sports Ground
Harrow View
Middx HA2 6QQ

It will be a night of food and drink and lots more....
The details of the night are yet to be confirmed, but jot the date down in your diary and keep an eye on this blog and we'll update you as soon as we know more.

Look forward to seeing you there!

Charity Gala Bash at The Birdcage 3rd August 2006

THANK YOU! To everyone who came to our first charity fundraising event!

It was a night of music and fun at the Birdcage in chiswick as there were performances from Charlotte's sister Sophie and her friend Roz, and Eliot, barman at The Birdcage. There were family friends dressed as 'sexy nurses' who were in charge of the charity buckets, one of whom was auctioned off to strip! As well as stripping nurses, there was The Birdcage's very own private art collection and stunning collection of wooden birdcages that were also auctioned off to raise money for Charlotte's Trust Fund.

We made an amazing £2500 that night! So thank all of you who came, and keep an eye on this blog to find out about the many more fundraising events that will be happening in the near future.

CD's of the professional photographs taken of the evening are avilable to buy for £10. There are 160 pictures on this CD and they are very amusing! Definitely worth a tenner! Please email and we'll sort you out with one.

For further information or for contact details of where to send any donations please go to Charlotte's web site . This web site is currently in progress and so there is a holding page up, but shortly you will be able to give donations by card.

All donations and money raised will go towards supplying Charlotte with a trust fund that will support the cost of her prosthetic legs and her general quality of life.

Thanks again, we'll keep you posted ;)

Charlotte's Story so far...

Monday the 29th of May. After a long sleepless night of sickness, camping in the Alton Towers campsite, Charlotte took to the shower to try and sooth her headache and refresh herself. No sooner had she stepped in when she collapsed and fell into a semi-conscious, delirious state. Her friends were nearby and promptly took her to see the on-call doctor who immediately called an ambulance to the nearest hospital in Stoke-on-Trent. It wasn’t until Charlotte was inside the ambulance that the paramedics noticed red marks beginning to form on her neck. It was the trademark Meningitis rash.

She was rushed into A&E and pumped full of liquid and drugs to keep her blood pressure up and her heart beating and was placed on a ventilation machine to keep her breathing. Within hours she was unrecognisable. She was bloated to three times her normal size with 7 extra litres of water escaping from her damaged blood vessels. By the time her family arrived the doctors warned she had a 30/70 chance of surviving.

Charlotte’s fragile state continued for 10 gruelling days as day by day, doctors advised family and friends to take each hour at a time. Any one of the countless times that Charlotte’s blood pressure dropped it could have taken just minutes for her body to give up. But Charlotte is strong. And finally, on the 8th of June, she began to take a few breaths on her own and her blood pressure, heart rate and temperature began to stabilise enough for everyone to allow themselves to hope. The rash had left vast areas of dead skin, tissue and muscle, especially on her legs and around her sacral area. Her feet had no pulse and her legs and fingers were cold and steadily turning from red to black.

A CT scan showed that there had been some bleeding into the *spinal fluid* area of her brain and her reluctance to wake up suggested there could possibly be some form of brain damage. However, on the evening of Friday the 9th of June, although very disorientated and still full of pain relief and sedative drugs, Charlotte slowly began to come round and return back to herself.

At this point Charlotte was awake and breathing and it was possible to wean her off of some of the isotope drugs for her blood pressure. However, her gut, liver and kidneys were still showing no signs of regeneration and the doctors could still not find a pulse in her feet and fingers on her right hand which were steadily turning black. Also, the extra fluid which had been needed to steady her blood pressure had now begun to seep through the skin on her legs and within a day they were covered in blisters so severe, the hospital would need to treat them as 95% burns.

Because the damage to her legs would have to be treated specifically, and the fact that Charlotte was currently in a paediatric ITU which did not have the facilities to properly deal with a teenager, the decision was made to move her closer to home to Great Ormond Street Hospital in Russel Square on the 11th of June. Here she could receive specialist care for her renal failure and be nearer to her friends and family.

Within 24 hours of settling into her new environment, Charlotte’s blood pressure began to drop and her temperature yet again increased until dangerously high and it became suddenly apparent that somewhere in her extensive wounds she had become infected and was now going through a second hit of septicaemia, similar to the meningococcal bacteria she had first contracted. This obviously had devastating effects for her liver and the areas of her body which were previously beginning to heal. Charlotte was unconscious for yet another 7 days.

By this time it had been over two weeks since she was first hospitalised and since her feet and legs and fingers had been first affected. Now the outcome was looking grim as her fingers on her right hand and two fingers from her left along with all her toes, which were steadily turning black were now mummified and her legs were in a bad way. While still in intensive care in great Ormond Street a specialist burns surgeon from Broomfield hospital in Chelmsford came to perform debridement surgery on Charlotte’s legs and sacral area and advised that she was better off in the specialist burns unit in Broomfield.

2 days later, on Sunday the 23rd of June, charlotte was taken to Broomfield in a CAT mobile intensive care ambulance and placed into the burns intensive care unit. This is where she has remained for the past 7 weeks and where she will remain for the remainder of her recovery.

After the debridement surgery in Great Ormond Street, Charlotte’s legs were in some places, deprived of so much tissue and muscle that her leg bone was visible. It could now be confirmed that the bones in her feet were dead and a decision was made that to give Charlotte the best chance of mobility, they would need to amputate her legs below the knee. By this point they also knew that the fingers on her right hand were also beyond recovery and would also need to be amputated. However, her left hand made a remarkable recovery with only the very tip of her middle finger remaining black. Finally there was some good news as her kidneys started to produce urine and it seemed Charlotte would be able to begin to be able to heal her wounds.

She has been in severe pain since her amputation and then had to undergo skin grafting to apply skin to her thighs after her own skin, tissue and fat being removed in the debridement. This skin has been grafted from her stomach and chest, her back and her right arm which has left Charlotte in great discomfort and severe pain on almost every part of her body. She was then susceptible to countless numbers of infections which can greatly slow down the healing process and doctors advised that it will be at least another 8 weeks before she is able to return home.

On Sunday the 16th of July Charlotte contracted pseudomonas. This relatively harmless bug that in you or me would cause an upset stomach, took over Charlotte’s body and by Wednesday she had gone into shutdown and yet again become septic. This septicaemia, like before, was damaging every organ. In the next 4 days Charlotte condition continued to get considerably worse as her immune system showed signs of not working effectively and therefore not getting rid of the infection which was still being pumped round her body in her blood. On Saturday the 23rd Charlotte became grey and her heart traces began to look tired and her blood pressure took several dramatic drops which suggested that her heart was not effectively pumping blood around her body. The doctors told us all that it would take a miracle for her to survive and we were advised to prepare ourselves because they couldn’t see how she was going to make it through the night.

Charlotte defied all medical logic and the next day began to look better. Her colour returned to more of a pink than a grey and her heart began to regenerate. The miracle that all the doctors and nurses had said we’d need, had happened. Although, at a cost. This dramatic hit to her body had lasting effects and now Charlotte will need a colloscapy which will leave her intestines outside of her body in order for them to heal properly for the next 6 months. They also had to cut away more of the tissue and fat around her sacral area and are now worried about the condition of Charlotte’s muscle in this area, which could have detrimental effects to her quality of mobility as her strength will be severely weakened in an area which would ordinarily support most of her weight for walking. Her fingers and some of her palm on her right hand also had to be amputated as they were infected. Charlotte’s condition will now be considered unstable and very vulnerable for the next 2 to 3 weeks.

On the 5th of August, yet again we noticed a small rash developing on Charlotte’s left arm, the only part of her (apart from her face) that isn’t covered. After 3 days of watching and waiting, the doctors then discovered that it was in fact, another infection. Apparently the same one as before, pseudomonas. Charlotte appeared to be fighting it off well at first, but this morning, on the 9th of August, she is showing signs of struggling to keep the infection under control and runs a substantial risk of going into her fourth hit of septicaemia.