A REDNAL mum has pledged to hold a different fundraising event for every month of 2017, after her newborn baby was diagnosed with a life-limiting disease.
Midwife Sophie Robinson, 30, was told when her first daughter Charlotte was just two weeks old that her baby had cystic fibrosis and could need a lung transplant in later life.
The disease means that Charlotte has to undergo hours of physical therapy everyday to help with her lung function and mobility.
Sophie said: "After finding out, for a whole month I didn't go out the house once, which was really hard. I had a lovely straightforward pregnancy. There were a few little problems after she was born but nothing that would have given us any clues to this. I cried for days.
"I finally plucked up the courage and I've been out a few times in public with her. Charlotte needs medication before all her feeds, which is a tiny little scoop to help her digest her fats, and it could all look a bit weird to people who don't know.
"It's been quite a lot of adapting to what it all means for Charlotte and I've been having some help with dealing with it and one of those things that is meant to help is helping others."
Five months after her daughter's diagnosis, Sophie has set up a Just Giving page to raise money for the Cystic Fibrosis Trust and Birmingham Children's Hospital, which has helped with Charlotte's specialist care.
The site will be updated with upcoming events throughout the year, including Sophie's quest to complete 20 ironman triathlons between herself and any other determined fundraisers.
Sophie added: "Anyone can contribute to the distances by running, cycling or swimming. Whether it is a regular gym session that you do that could contribute or even an organised charity event that you are willing to take part in and donate the money you raise."
The determined mum is also rallying support for the Cystic Fibrosis Trust's #YesOrkambi social media campaign, to help raise awareness of the Orkambi treatment, which is not yet available on the NHS but could be life-saving for those with Charlotte's form of cystic fibrosis. Anyone wishing to take part should post a selfie on social media with the hashtag YesOrkambi.
To find out more about Sophie's 12-month fundraising challenge or to donate, visit justgiving.com/crowdfunding/charlotteandthesixty-fiveroses.
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