charlies challenge

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Wednesday 6th April 2011
The support we have received from family, friends, colleagues & people we don’t even know,
has been out of this world – this has made our nervous journey a whole lot easier, thank you everyone.
Our fund total is currently £21765 and this has been achieved in just 7 weeks – what an amazing amount of money!
The hospital have confirmed the date of the operation as the 12 July 2011 so it’s all very ‘real’ now.
Charlie is loving the attention and taking every opportunity to make a speech at any event we attend – we are sure
he will be a public speaker when he gets older!

Wednesday 18th May 2011
Oh my goodness, we are just over £50,000 now! We can’t believe how much support we are getting, it’s truly amazing.
The operation is only about 9 weeks away now and we are going to be booking our flights this week.
Again, thank you so much to everyone who has become part of this journey – we couldn’t have done it without you!
Whilst we are in the USA we will be having updates loaded on here to let everyone know how we are getting on

Monday 20th June 2011
We are on countdown now for leaving for the USA.Its all becoming very real now.Due to the amazing support of everyone, the target amount has been reached which is truly wonderful!With the balance of the money raised we will be able to give Charlie the chance of having private physiotherapy and any equipment needed for his recovery and rehabilitation.Once that has been completed we are going to donate the rest of the money to two great centers that treat children in the same situation as Charlie – Footsteps & The White Lodge Centre – this means that other children will benefit as well as Charlie. Thank you so much for being part of Charlie’s amazing journey x x

July 2011 Update

In January Charlie was accepted by St Louis Children’s Hospital for the SDR Operation !!!
And oh my goodness…..with the help of family, friends, colleagues and complete strangers we hit the fund target total JJ
Charlie will be having the operation on 12 July so it’s coming round extremely fast now – we leave this FRIDAY!We have to be in the US for a total of 1 month - the first week is pre-op, op and then initial recovery and then the rest is daily intensive physiotherapy (the operation is around 30% of the final result and physio is the rest).The physio will continue when we return home for an unconfirmed amount of time, estimate is around 18 months but could be longer/shorter depending on how Charlie reacts to the operation.We have mixed emotions of excitement and nervesbut we are sure that we have made the right decision for our special little boy Charlie to give him the chance of a pain free and more independent future.If you would like to follow our progress whilst we are over in the US, we hope to post updates on Charlie’s face book page (Charlie’s Challenge) and his web site (

Check out this message from Charlie himself:

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The big day is now here the 8th of July as we set off for the USA. Please follow Charlie's progress below as we will update each day as it unfolds. Thanks again to everyone for your support and donations. Kind regards Mark and Louise. xx

Sunday 10th July 2011
All settled in at the Marriott Residents Inn - the staff are brilliant - met up with 4 other families from the UK who are going through the same as us which really helps. Going to the hospital tomorrow (Monday) for the pre-op. Countdown begins.

Monday 11th July 2011
Met the amazing Dr Park himself this morning. He confirmed that he does expect Charlie to walk independently, of course this was the best news ever for us! Charlie is 2nd on the list tomorrow morning at 11am. This means by 9pm Tuesday GMT it should be finished.

Tuesday 12th July 2011
6.30pm UK time: Our brave little boy is now with Dr Park in surgery. Just waiting for the call to say they are starting. We are so proud of him, no tears atall (just from me and Mark!) this is going to be a long wait but its all going to be worth it.
8.30pm UK time: Thanks to everyone for their kind support, we have had an update saying that everything is going really well and that they are over halfway through and should be finished in about another hour and a half, seems like an entirety but will be gone soon.

Wednesday 13th July 2011
Dr Park came along & confirmed that everything went well, WOW! We got to see Charlie in recovery & then transferred to PICU (intensive care) which is normal. He will be there until tomorrow lunchtime & then to a ward and discharged on Sun. He is doing great, in pain between sleeping & having lots of drugs to manage it. At one point he got very distressed and Lou passed out she is fine now was all a bit too much!

Charlie is now a little bit more settled. At 8pm he was turned onto his side which he coped with remarkably well. He is still very drowsy and having muscle spasms which are causing the pain but the drugs are given at regular intervals and topped up if necessary. Mark is staying the night at the hospital and I will be back there first thing in the morning to see my brave little boy. Nite nite.

Unfortunately Charlie has to stay on PICU for another night. He is doing so well & cant tell you how proud we are of him even with the pain he is managing to charm the nurses & saying please and thank you, bless our little super star.Had a few sips of drink but nothing to eat yet.Sleeping very well right now as I am typing (we are able to use all forms of communication in his room which really helps pass the time)

Thursday 14th July 2011
We had a slightly better night last night and when there is a free bed we can transfer upstairs which will be great and what Charlie is looking forward too. Everything seems to be going to plan thank god and he is right on schedule with what he should be doing and the way he is feeling which is good. Everyone here is amazing makes the time easier. Thanks for all your kind thoughts, I have been reading him them all.

Friday 15th July 2011
What a difference 12 hours makes - at 7am he didnt seem any better - at 7pm moved to 12th Floor Childrens Ward & we got back our Charlie!!!We had giggles & smiles from our little sweetheart it was just lovely. Tomorrow will be the first physio session moving from bed to wheelchair.We asked Charlie if his legs felt different and he said 'yes they feel wobbly' to think that before Tues they were stiff is amazing.

Update - At 8:30pm Charlie had a double orange lolly pop. At 9:30pm he had cheese, ham, grapes, biscuits and sprite - not surprising as he hasnt eaten since Monday night - he must have been starving.

Well Charlie has finally got out of bed which he was very scared of doing,down to the physio room with the physio who is great.He showed us very quickly the new range of movements that Charlies legs will perform without the spasticity in, this also outlined the fact that he is now very weak and that there is a lot of hard work in the months to come.We are so happy with what we have seen today and only day one.

Tuesday 19th July 2011
Charlie has had a really good day at physio and actually got into his walker today and took about twenty steps although still very weak but getting better every day. So good to be back at the hotel now and starting to get back to a bit of normality. Thanks for all your comments Mark,Lou,Charlie and Ella xx

Wednesday 20th July 2011
At todays physio we saw improvements again!His walking in his walker was better,used the tripod sticks,used the treadmill,climbed a rock wall,leg presses-all with help of course! He is achieving things way before we thought he would.Daily physio trips to the hospital continue until we come home.He is even getting physio homework! Charlie says that he is missing all of his friends at school &will see you soon x

Sunday 24th July 2011
Charlie now has much more control when walking in his walker + sticks not quite as stable as before (that will come) but much better walking pattern & his feet are much flatter.He now has knee immobilisers which he has to wear every night that means his legs are kept straight and he cant bend them atall just like a plaster cast & he has not made a fuss atall bless him x

Monday 25th July 2011
Cant believe its 2 wks tomorrow since the op.Charlies private physio Anna Will arrives Friday to see first hand the post-op physio which will benefit not only Charlie but many other children Anna treats.We had rain here yesterday for all of 5 mins so hopefully the temp will drop-we had 106 last week!The families here at the the hotel are great support & tks to you guys on FB for yours too we really appreciate it x

Wednesday 27th July 2011
Its been confirmed that Charlie now needs to have his hamstrings & achilles lenghtened. As it cant be done until the day before we leave (not leaving enough time for recovery) we will be coming back in October. This will be the final piece of the puzzle trying to get him up and walking independentely.

Took Charlie to his 1st Baseball game last night at the Bush Stadium to see the local team St Louis Cardinals & they won! Charlie got right into it and loved it. Had good physio session today at the hospital and going swimming this afternoon for another workout and then into the hotel gym for more physio. We are working him so hard but its all going to pay off!

Saturday 30th July 2011
We went to St Louis Zoo today and had a lovely time. It was a bit like Jurasic Park as it was raining with thunder and lightning whilst we were on the zoo train passing some high electric fences ... quite spooky! It was very cooling with the rain and we didnt mind one bit getting soaked! Now off to the gym and pool for physio x

Wednesday 3rd August 2011

We had the post op meeting with Dr Park and he still expects that Charlie will independently walk :-) but will definately have to have the lengething done. He is still doing really well at Physio and getting stronger on the treadmill each day. Very pleased with the results xxx

Friday 5th August 2011
Although Charlie is still quite weak he has improved so far with the following; better walking pattern with sticks & walker,more flexible,able to sit crossed legged, lovely straight back when sitting, no more dribbling,able to raise both arms in the air straight - small things to some but massive to him and hopefully more to follow x

8am physio tomorrow and then off to the airport, we are glad to be coming home but will miss all of our new 'SDR' families we have met & the support of everyone at Childrens Hospital St Louis.We have a long road ahead of us getting Charlie walking independently but we have fantastic support at home to get us through it. Goodbye St Louis and hello Yateley! x

Sunday 7th August 2011

Home Sweet Home :-) Charlie had 15 hours sleep last night bless him. Gave him a rest with no physio this weekend but back to wearing his night splints AND knee immobilisers tonight and physio starts again tomorrow with Anna Will !! Thank you everyone for all of your support throughout Charlie's journey, we will keep you posted on how he progresses xxx

Tuesday 23rd August 2011
Charlie is doing really good with physio with Anna and at home with us and on the treadmill (record of 11mins last night!). Finding it hard to wear his night splints and knee immobilizers which keep his legs straight all night poor thing Seeing improvements every week with his strength and what he can do. Starts his horseriding again this weekend which is fab physio.

Monday 5th September 2011
First day back at school since the SDR Operation today.How amazing that Charlie was able to sit on the mat crossed legged (he couldnt do that before) with all of the other children rather than in his 'special' chair - not only great for us, but imagine how he must have felt! Using his tripod sticks around school now and only the kaye-walker at breaktimes. We are so proud of you Charlie. xxxx

Thursday 6th October 2011
Charlie wrote us a card at school .....I love you mum and dadi just want to say thank you for the SDR Charlie. xxx

Wednesday 19th October 2011
All packed and ready to go tomorrow morning back over to the US for Charlie's 2nd Operation (heal cords & hamstring lenghtening) Just Mark and Charlie this time for 2 weeks. Charlie had another lovely card from school today wishing him good luck. Going to miss you both loads and wish we were coming with you. Lots of Love Mummy & Ella xxxxxxxxxxxxxx

Friday 21st October 2011
Mark + Charlie arrived safley, they got upgrade to Business Class and First Class for the last hr!!! Charlie went in the cockpit and the crew loved him and showered him with gifts and Mark with champayne!! Thanks to whoever arranged all of that, really grateful!! Looking forward to hearing what the physio team at the hospital think of his progress so far when they go today. xxx

Monday 24th October 2011
Charlie went to the hospital and they were amazed by his progress and said that he will improve even more once this surgery is done which makes us feel better, unfortunately I am unable at the moment to upload any pics or videos onto facebook as it doesn't seem to be playing ball and recognise my blackberry. We are having a good time been to the magic house and just trying to have fun before tuesday.Will update more after tuesday. x

Charlie in his ghost outfit for the Halloween SDR Party in hotel (yes it IS Charlie - you can only tell by his walker!) Charlie is having is op tomorrow at 11am (5pm UK time) and he got very upset today realising it was tomorrow - wish i was there with him giving him big kisses and cuddles They are having fun today at the science center and then the brilliant St Louis Zoo. Kisses and hugs to you both, love you all the world love mummy and Ella xxxxx

Tuesday 25th October 2011
Charlie ended up going down early, got into the hospital at 9.15 was wisked into the room had a chat with the doctor and everybody else involved and into the operating room within 20 mins as they ended up switching him with the child who was due to go in at 9.30 and couldn't because of some complications.No chance for ...any pre med and just had to sya good bye at the doors to the operating theatre, he was upset but sure it was better to get it done that quick rather than hanging around till 11 which is when we were due. Tough day but know it is for the best. xx

As I was behind on my post ,I have just had a call in the room from Dr dobbs to say that every thing is fine and that they are really pleased with the way everything has gone, should get to see him in about 20 mins time then the tough bit while they wake up but very happy at the moment. x

Charlie up on the ward now, just ordered some food and as soon as he has had something to eat and been to the loo we can go back to the hotel. So very very proud of him xx

Sunday 30th October 2011
Poor Charlie has been really suffering in lots of pain and couldnt stand his legs being touched (much more painful recovery than the SDR op) lots of crying and screaming (poor Mark is having to put on a brave face for him). However news flash just in ***Charlie has just taken 20 steps in his walker**** huge relief and hopefully its just going to get better everyday now - didnt think this day would come. Really feel for them both and feel useless being so far away and unable to help. Keep up the good work Charlie Pickle, we know you can do it + keep going Mark only 6 more sleeps until you are home xxxxx

Friday 4th November 2011
One more sleep and my boys are HOME!!!! Charlie has improved immensely over the last couple of days taking some independent steps and standing for 30 seconds without his sticks. SO SO proud of them both and have missed them loads. Its been a really tough two weeks for both of them, so glad its all over now. Cant wait until tomorrow morning for lots of hugs and kisses. xxxxx

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