Charlotte's Challenge - SDR
Thank you for visiting our 'Charlotte's Challenge - SDR' JustGiving page...this is our very precious and amazing daughter Charlotte Vanessa Chloé whom, with her identical twin Amelia Louise Chloé, has already survived a life threatening condition whilst they were still in the womb called Twin to Twin Transfusion Syndrome (TTTS) for which I had to have laser ablation surgery for at 17 weeks pregnant...their only option for survival which was successful, then them being born very prematurely at 28+6 weeks weighing a very tiny 2lbs 11ozs and 2lbs 9.5ozs respectively...they were fighters from the start as was their big sister.
Due to TTTS (we believe) Charlotte was diagnosed with Cerebral Palsy (Spastic Diaplegia) at 18 months old. She is now 3 years old and is unable to stand or walk unaided, has very tight muscles in her hips, legs and ankles which cause her a great deal of pain, balance & coordination difficulties which has already caused her hips to become displaced, and in time will cause various other deformities leading to orthopaedic surgery after surgery.
Despite her physical disability she rarely complains and enjoys life to the fullest that she can. Charlotte is such a happy, determined, funny, bright little girl and she is the reason we get out of bed everyday! She works very hard at physiotherapy, be it one to one or in groups although can, at times, be distracted easily by others ;-) She uses a Quest Rollator which gives her some freedom which she makes the most of.
We, Amanda & Andrew (her parents), have agonised over the decision to start fundraising for a surgery called Selective Dorsal Rhizotomy (SDR). SDR involves cutting specifically damaged nerves attached at the base of the spine, hopefully relieving Charlotte of at least most of her spasticity if not all. The optimum age for this surgery is 2-4 years old as the longer the spasticity is there the more damage it will do.
We are looking to raise £80,000 for this life changing surgery through Tree of Hope, a registered charity...a massive amount by most people's standards! We are currently looking at taking her to St Louis Children's Hospital in America for the world class Neurosurgeon Dr TS Park to do her operation who has been doing this surgery for 25+ years and has done over 3000 SDR operations with an undeniable success rate. The UK started doing this surgery a few years ago and we are looking into having it done here too but honestly we would like, as I am sure most parents would, the person who has the greatest experience at doing this complex surgery to look after our precious child. This amount would pay for the surgery (if we need to go to America or if we need to fund it privately in the UK), after care, flights/accommodation if necessary, private physiotherapy (regardless of where she has it done) which is upwards of £1,500 per month for up to 2 years plus and necessary specialist gym type equipment.
Charlotte is physically unable to join in most physical activities with her friends although we try to enable her to do so as much as possible but that means at least one of us having to help her whilst her friends are able to dance, play, jump etc. by themselves.
Andrew & I are extremely private people so that is partly the reason why we have delayed starting this fundraising as we want to be as open and as honest as possible, which we will be. There is also the potential risks this major surgery involves; paralysation, meningitis being two of the most serious!
The third and final reason this decision has been so agonising is that Charlotte is not our only child...as mentioned above she is an identical twin, sadly and unexpectedly her twin Amelia died from meningitis at 10 days old as despite surviving TTTS and being so premature was doing really well, breathing on her own (as Charlotte was) within a few hours of birth. Their big sister Chloé Louise (our first-born) came into our lives in 2006, she gave us the most amazing experience of being first time parents. Tragically in February 2007 Chloé died, just before turning 1, from meningitis (different strain to Amelia's) due to NHS medical negligence. So we have already had to say goodbye to and bury two of our children, having Chloé die was (and still is) unbearable and then having Amelia take her last breath in my arms too is just incomprehensible! So, as I said earlier, Charlotte is the only reason we get out of bed everyday and honestly why we are still here.
I am a very 'all or nothing' type of person and coupled with all that we have been through/are still going through even the thought of this fundraising causes me personally great anxiety and stress before it has even begun! I want to do all I can to help our daughter lead a pain free and physically more able life, and this operation is currently the only long term option.
So, if you are able to please donate to her fundraising page...one pound would be amazing and so gratefully received...even better 'Challenge' yourself and do something you may have always wanted to do/did not think you could do...become one of Charlotte's 'Champions' :-) Friends and family, as will we, are going to challenge them/ourselves...it would be fantastic if you could join us.
Our little girl would like to be able stand, walk and run like her friends can, ride a bike, dance and jump in muddy puddles like Peppa Pig, most importantly be pain and deformity free...if you can help Charlotte overcome her challenges it would be priceless and we would be forever grateful...thank you xxXxx
To find out more and follow Charlotte's challenging but adventurous future:
Should we exceed the target amount (or if we do not raise enough funds, or if they cannot be used for any other reason) the funds raised will go to the general funds of Tree of Hope to assist other sick children.
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