Weʼre raising £25,000 to take Charlee to innovative therapy 4 kids in America
- Health and medical
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Charlee was diagnosed with Mobieus syndrome at 3 months old. Mobieus syndrome is a very rare neurological disorder that affects the 6th and 7 th cranial nerves. 1 in 500,000 children can be born with this condition and at the moment there is no reason as to why.
For Charlee the simply things we take for granted she finds difficult to do. She is unable to smile, eat orally and swallow. She also has hypotonia (floppy muscles) which affect her movement and motor skills, a clef pallet and one kidney.
She is currently is fed via gastric port into her lower bowel. As she gets older and with therapy we hope that she will begin to eat orally.
The reason for our page is that we hope to fund raise enough money to take Charlee to a clinic in America that we have been working with via Skype that have worked with children like her and got exceptional results. The cost of the trip is going to cost us between 20K & 25K so any donations will help tremendously. We are hoping to smash our 10K target. Whilst the NHS have been great in treating Charlees medical needs there is no one in the U.K that have the expertise therapy she now requires. The clinic offer innovative therapy to children using the latest state of the art treatments, techniques and therapies. Charlee will have access to therapists that are trained in child development, neurodevelopment, sensory integration and sensory motor development, as well as speech and language pathologists, Occupational and Physical therapists all under one roof.
Both Steve and I both made a promise that we would do what ever it takes to give her the best life possible and that she deserves. Over the rest of the year family and friends will be raising money doing various things so we can finally take her to America in 2018 when she is strong enough to cope with the flight.
To kick start the fund raising Steve and his friend Lee will be doing a skydive.Date and time to be confirmed.
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- 6 months ago
Natalie Muller6 months ago
So Steve and Lees skydive is booked for the 25 th June. Today we did a carboot sale Which raised £265. Lots more planned so keep watching
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Natalie Muller started crowdfunding
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Nov 6, 2017
Marion and Frank
Oct 21, 2017
Hi Natalie and Steve, we are donating to your Crowdfunding Account directly as your Dad's Account has been closed down so we were unable to support his walk. We wish Charlee all the very best.
Oct 8, 2017
For Allen's run - Richard Halliday
Oct 5, 2017
Oct 3, 2017
Jonny and Emma Bugg
Oct 3, 2017
Oct 1, 2017
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About the fundraiser
Mum of 2 gorgeous girls and partner to Steve, help me raise money for my little girl who has mobieus syndrome and the chance of therapy in America
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