Founder’s Story

Charlie was born with Spina Bifida, meaning she has a small piece of spine missing. She was operated on at just over 24 hours old with no guarantee she would survive. What her life would bring was unknown and she was unlikely to walk. Within a few days of surgery doctors told her parents she had another condition known as Hydrocephalus. Hydrocephalus is life threatening and means the water on Charlie’s brain doesn’t drain away. Doctors needed to perform brain surgery to fit a shunt to drain the fluid.  Charlie was doing well but around two weeks old she contracted meningitis. Doctors told her parents she was very poorly and her shunt was the cause as it’d become infected. Charlie needed more brain surgery with meningitis.

Charlie led a ‘normal’ life despite the doubts of doctors she learnt to walk and went into mainstream school. Hydrocephalus causes learning difficulties and she had some developmental delay but she coped fine with an assistant in class. She began horse riding and ballet age 3. Apart from hospital appointments and a few operations one of which landed her in intensive care for five days Charlie’s life was totally ordinary. It wasn’t until she turned 9 that her life changed more than she could ever realise. She began to suffer from headaches but nobody knew why. It took over six months before doctors discovered her shunt had blocked and broken apart. She was very poorly and needed emergency brain surgery. During the surgery she suffered a stroke which paralysed her down the right side of her body affecting everything from her mouth to her toes. Doctors said she’d never walk again. Charlie and her family were now faced with the unknown. Charlie proved the doctors wrong and re-learnt to walk, talk and re-gained her life. She was left with brain damage and with a wheelchair and also suffered psychological problems requiring therapy. She went back to school and returned to dancing, gradually her strength grew.

Two and half years later she became ill, she was tired and felt poorly all the time. It took three years to diagnose her with M.E. Charlie ended up bed-bound, her legs were paralysed and at her worst point she could barely hold a conversation. She had her shunt tested twice in this time because concerns grew about how ill she was, thankfully both times were false alarms. However it showed up a new condition known as Chiari Malformation type 2 which causes headaches and could stop her from walking. When she was 15 Charlie slowly improved and returned to school.  Her school were sceptical about her taking her GCSE’S with only 5 months studying but she proved them wrong, gaining a B, two C’s and two D’s. Around the same time Charlie returned to her love of dancing at a new dance school which also offered acting and singing lessons. This led to Charlie being part of the choir and having solo performances for both her acting and singing.

Charlie hoped people’s attitudes would begin to change now she’d gained her GCSE’s and some people were very encouraging. There were still some who didn’t believe she was capable some even repeatedly trying to make her drop one of her A level’s. She refused on the grounds she wouldn’t get a place at university. She was once told she shouldn’t expect to get into university! During Charlie’s second year of college she began horse riding and professional vocal coaching. Charlie went on to prove everybody wrong and left college with 3 A level’s, in psychology, history and health and social care. She also gained a place at university to study psychology.

Her time at university was amazing she met some lovely people and for the first time felt as though she was encouraged with her education. Whilst at uni she underwent several foot reconstruction operations. After each operation Charlie became wheelchair bound sometimes for 2-3 months and then had to get use to walking again but on a newly shaped foot. At the end of 2010 Charlie wanted to give something back and became a volunteer at her local children’s hospice. In November 2012 Charlie graduated from University with an honours degree in psychology.

In May 2014 Charlie fell down the stairs at home and was knocked un-conscious and on waking it was discovered she was paralysed down the right side of her body. 4 months in hospital showed her shunt needed altering and she underwent 3 surgeries. Her health improved for several months however by January 2015 another 3 month stay was ahead of her and after a surgery and scans revealed Charlie’s shunt no longer worked properly doctors performed a full shunt revision. However within 24 hours of this new shunt going in she needed another one as it had blocked. Life was returning to some normality however it wasn’t to last longer than a few months before Charlie was diagnosed with a rare genetic condition known as Ehlers Danlos Syndrome.  A condition known as a connective tissue disorder, making joints unstable and giving many other symptoms. At the same time Charlie was also diagnosed with gastroparesis and malabsorption. Conditions that cause the intestines to become paralysed and unable to break down and absorb food properly. With this new diagnosis came the knowledge that what was actually EDS had been misdiagnosed as ME. 

Charlie’s shunt issues continue to be an issue so in 2016 they fitted a monitor in her head so they could measure the pressure inside her brain but without the added need of having to drill a hole in her head every time they wanted to know what the pressure was. Over the last few years Charlie’s health has become more complex and many hospitals admission have happened. However no matter what the future may hold Charlie is determined that her dedication to Muffin’s will continue. 

Charlie wouldn’t be where she is today or have started Muffin’s if it wasn’t for her beautiful sister and cousin Emz and Beth, best friends David, Roxie and Dani, her inspirational Nan’s and family. As Charlie say’s it’s not what happens to you that is important it’s what you do with it that counts.