Please watch Charlottes new YouTube fundraising video below! Xxx
xxx Charlottes fund xxx
Please Help me to walk, and kindly take the time to read my page. Thank you xxx
What we are raising money for:
We are raising money for the best chance that Charlotte has to Walk we would like to raise enough for Charlotte to travel from the UK to the USA for her to have the procedure Selective Dorsal Rhizotomy by Dr Park at St Louis Childrens Hospital, She will also have a tendon lenthening operations and will need medical equipment such as splints and physiotherapy every day. The whole procedure recovery and therapy will last around 4 weeks. When Charlotte returns home it would be beneficial for her to have continued physiotherapy, and purchase her a specialist walker and new specialist trike for her continued therapy at home.The operations will not only give Charlotte a better quality of life they will eliminate the spasticity in her legs and will eliminate the daily pain that her tight muscles cause, we have also been told that this miracle operation also helps children to relax there upper body and it helps with incontinence.
About Charlottes conditions:
Charlotte has severe Spastic Quadriplegic Cerebral Palsy mixed type affecting all her body and limbs her upper body is more severe than her lower, her left side is more severe than her right. Charlotte has a Severe Vision Impairment and Epilepsy. Charlotte has Hydrocephalus, the accumulation of Cerebrospinal fluid in the ventricles of her brain because it's normal outlet has been blocked by damage to her brain and fluid build up causing pressure on her brain which can prove fatal. Charlotte was then immediately fitted with a Shunt which drains away excess fluid relieving the pressure. Charlotte is also gastric tube fed directly into her stomach due to reflux being so severe she was drowning on fluid in her lungs along with a failure to thrive. Charlotte also had a operation called a Total Gastric Disassociation a operation similar to a Gastric Bypass so any food or drink bypasses the stomach and enters her intestines instead her stomach the stomach is now also closed off at the top and has a button feeding tube there to get all her main nourishment. Charlotte also has Hypercalciemia that has and is continuing to leave calcium deposits on her kidneys which poses a significant risk in the distant future and could possibly cause severe damage to her kidneys sending her into kidney failure.
Charlotte can not sit or walk unaided but she can stand with assistance take steps and walk for some distance with a little help in her walker, she has great potential to Walk as she can glide around walking in her school walker and loves to have races with her friends at her school roamer club. Charlotte has built up good strength in her back and legs over the years, but because of her tight muscles in her legs, this prevents her from making any more progress with her sitting and walking.
Charlotte has so much determination against all odds and brick walls that are put in front of her she has the most beautiful smile that melts the hearts of everyone around her. She has a silly sense of humour even though she maybe has ten spoken words she understands and interacts and responds in her own special way to get what she wants, she has great understanding like any other six year old. She tries so hard daily to achieve better than her best and not a day goes by without a smile or a blew kiss from Charlotte.
When Charlotte was little:
Charlotte had a rough start in life, born at 31 weeks gestation via emergency section due to her foetal waters and placenta becoming infected, she spent three months on the neonatal ward, only to descover that during her last moments in the womb lying absorbing the infection it attacked her brain with with devastating consequences, charlotte developed unrepairable damage, cysts (PVL) Periventricular Leukomalacia and a week later one of the worst brain haemorrhage you can have, a grade Vl (IVH) which caused her to have spastic quadriplegic cerebral palsy and core/central hypertonia (muscle weakness) during these early stages of life Charlotte had life battle after life battle defying the odds over and over again I can say that she has battled septicemia more times on both the fingers of my hands , Charlotte developed Neutropenia ( low white bug battling cells) basically she almost had no white cells left to fight infection, she battled lung infections, effects of aspiration, most of the time she was gravely poorly and the doctors just did not know why, Charlotte spent almost three years of her life in and out of hospital which although she has slowed down with admissions into hospital she continues with daily therapy and hospital appointments with her on going life care.
She's such an inspiration!:
With her going through so much in her short life she is and was always smiling and giggling and enjoying life to the fullest, even to the present day after two brain shunts, she was back at special school fighting fit in a week post surgery, she has also even stared in the Cbeebies 'Something Special' episode Trains, she loved every second of it.
Charlotte loves walking in her walker and loves every chance she gets to be independent, she loves music, and hums along to the songs she loves especially, let it go from frozen, she loves dancing in her walker and discos, to be honest I'm not sure what she does not like or enjoy, because she embraces life so much.
Everyone around Charlotte is so proud and amazed at what great things she has achieved so far.
It is upsetting sometimes to see her so frustrated with herself because she wants to join in like everyone else, and you can see her sometimes watching other children almost in awe.
Last summer, Charlotte was using her adaptive trike (which she has now sadly outgrown) and was playing out on the front of her house for the first time, with other children!! It is so hard to explain on here about how much fun she was having and so hard for me to explain what it felt like for me as her mother, for her to be (included and talked to ) by other children. The warmth and happyness that brought to me and her I think I cried every time she went out just seeing her little face beaming laughing and giggling with excitement!, till I told her she had to come in because it was nearly bedtime, she was not amused and cried for hours
These last few words are why we are trying to raise enough for her to just join in like everyone else!...
Thank you all for taking the time to read charlottes page, I hope you join our support for Charlotte and help her to reach her goals in the future.
Xxx Big smiles and a big kiss and love sent to all of you, from Charlotte xxx
I know we are asking for a substantial amount of money, So we would like to explain an example of how much all of procedures and therapy costs at present and depending on the currency rate at the time.
SDR surgery £54,000-£56,000
Tenden lengthening surgery £12,000
Splints,casts,hire of therapy equipment £6,000
intensive Physiotherapy sessions maybe twice a day for 3-4 weeks at £250 per session.
The return flights for just Charlotte
The high rate travel insurance due to charlottes severe medical needs
And charlottes out-patients accommodation whilst returning for all her therapy.
And hopefully on return we would like to purchase a lecky kidwalk walker £1,800-£2,200, this fabulous walker is designed to allow a child with complex cp to discover there environment around them as it is a forward walker, and one of the best designed walker that allows a child to be close up and involved as much as possible. It is a lightweight device that does not put to much strain on the muscles trying to move it.
Please keep an eye on my page for Updates of upcoming fundraising events in the near future. Thank you once again for reading this page xxx
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