THE family of a little girl with a rare muscle wasting disease are hoping to raise £200,000 to get specialised treatment to prolong her life.
Celine Lawrence, who is known as CC, was born in December at just 27 weeks.
She weighed just 860g.
She has endured multiple neonatal intensive care units, been resuscitated numerous times and fought for her life every step of the way.
Last January, after more tests were ran by medical experts, Celine was diagnosed with a very rare genetic condition called Congenital Myotonic Dystrophy which will severely impact her life moving forward.
For Charlotte Mears, 36, and her partner, Charlie Lawrence, 35, it was an emotional diagnosis.
They now hope to raise £200,000 to explore stem cell therapy and other experimental treatments.
Charlotte said: “As you can imagine, we both completely broke down, it was terrifying enough having a premature baby, but putting this condition on top, it was terrifying.
“The prognosis is not good.
“Being faced with that news, I don’t know how anyone would cope, we are trying our best."
According to Charlotte, Congenital Myotonic Dystrophy affects “every single organ and muscle” and as a progressive condition, it means they will continue to waste away without giving her the time to build up strength.
This means organs and muscles like the heart, lungs, limb muscles, her eyes, intestines and digestive system could continue to weaken and cause problems.
CC will have to undergo multiple surgeries.
No matter the trials and tribulations CC faces, she continues to be a happy little baby.
Charlotte said: “She can’t speak for herself but there have been so many occasions where she has surprised us by coming through the worst.
“Every time she has pulled through.
“She is such a cheeky little character, happy, smiley, a lovely little girl.”
Charlotte set up a GoFundMe Page in June to help raise an excess of £200,000 to afford “all the options” for CC, such as stem cell therapy, and alternative treatments and equipment currently not available on the NHS.
So far the page has already raised £35,070.
On Thursday a group of family, friends, and supporters will walk from Colchester Town Hall to Trafalgar Square in London to raise more money.
Charlotte will be looking after CC and then will join the walk for the final stretch of the challenge.
Charlie will be embarking on the 60-mile hike from its start time at 10am.
The 24-hour challenge will see the group stop off and walk through areas like Witham, Chelmsford, Ilford, London Liverpool Street, and more along the route.
Everyone is encouraged to join in or support, donation buckets will collect cash during the challenge as well.
Charlotte said: “The nerves are kicking in for everyone now as this is going to be huge.
“Anyone who wants to join is welcome, we have t-shirts, we want it to be an event people can join in anywhere they like or just be there to support.”
To join or find out more about the charity walk, visit instagram.com/save__cc.
To donate to the GoFundMe Page, visit gofundme.com/f/little-celine-affectionately-known-as-cc.
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