THE family of a little girl with a rare muscle wasting disease have taken on a 100km challenge to help reach their £200,000 goal to get specialised treatment to prolong her life.
Eight-month-old Celine Lawrence, known as CC, was diagnosed in January with a very rare genetic condition called Congenital Myotonic Dystrophy which will severely impact her life moving forward.
For her parents, Charlotte Mears, 36, and her partner, Charlie Lawrence, it was an emotional diagnosis.
But the pair are continuing their mission to raise £200,000 to explore stem cell therapy and other experimental treatments to help CC.
Last Thursday, a large group of family, friends, and supporters arrived outside Colchester’s Town Hall to take on a 60-mile, 24-hour walk from Colchester to Trafalgar Square in London in effort to help fundraising efforts.
Charlotte said: “We couldn’t believe the amount of donations and support all along the way, it was astronomical.
“People came out their homes to find out what was happening, it was such a nice moment, we will never forget.
“It was just a sea of pink t-shirts, the atmosphere was electric, there were nerves, enticement, everyone was confident.
“The whole walk people were pulling over to give donations.
“They are all sore, everyone has their war wounds – blisters, sprained ankles, a little worse for wear but are all still smiling and happy.
“All the emotions hit all of us at the end, it was such a special day, we will never forget it, it will be such a beautiful thing for CC to look at the videos.
Charlie took on the challenge and was “determined to get it done” whilst Charlotte joined with CC for the last final stretch of the walk.
When the 40-person group got past the 40-mile mark, they kept playing music, cracking jokes, and banded together to push through the challenge and stay motivated.
As the walk headed through areas like Witham, Chelmsford, Ilford, London Liverpool Street, and more, it was anticipated that the walk would conclude at 10am, Friday.
The group was ahead of time, and Charlotte asked them to take a break so everyone could make it to the finish line to greet them.
From the challenge alone, it has helped generate £10,000 from online donations and through on the day donations.
The family have now raised £46,005 so far as they continue towards their £200,000 target.
Famous faces like TV star Jake Quickenden took part in the walk and both Charlotte and Charlie are so grateful to everyone involved.
She said: “It’s hard to put into words, these people have dedicated so much of their time, to come and support, it is overwhelming. It means so much.
“I’m still riding the high.
“Jake, bless him, just turned up with a bottle of water and did the whole walk.
“We caught up with him and it was so nice to regroup and hear their experiences on the walk.
“We are so thankful to everyone who took part, the donators, the organisers, the people who have shared the event to help raise awareness.
“This is potentially what is going to save our little girl, you can’t put a price on that.”
Moving forward, there will be more fundraising opportunities in the future.
To donate, visit gofundme.com/f/little-celine-affectionately-known-as-cc.
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