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Text CHRL78 £1/£2/£3/£5/£10 to 70070
Charlie was born in September 2015 and was antenatally diagnosed at 11 weeks with Turner syndrome. Turners is a chromosome abnormality that occurs randomly and diagnosis given in pregnancy comes with a massive risk. 99% of babies with Turner syndrome pass away before birth and I had been told to expect the same. By 23 weeks gestation, Charlie's body had been flooded with fluid which had shifted her organs around and was stopping her lungs from growing. She was diagnosed with a severe heart condition and doctors advised us to go home, rest and expect to lose her within the week.
We travelled to specialist foetal medicine units around the UK for 2 weekly scans and each time we went, Charlie was very poorly but somehow still alive. Time ticked along and Charlie was delivered at 38 weeks. She was very poorly immediately after birth and was resuscitated and incubated to keep her alive until she was stable enough to have open heart surgery at 7 days old. She was very unwell for 4 weeks and during her stay in ICU, Charlie had an MRI scan which showed she had brain damage caused by a stroke at birth.
Charlie's diagnosis is Turner syndrome, Heart Disease, Cerebral Palsy-right sided paralysis, global developmental delay, suspected Epilepsy, primary Lymphoedema, severe GERD, hearing loss, and is short sighted. She also has a very low immune system which causes her to be unwell and hospitalised for much of her life. Charlie was fitted with a gastrostomy which is a tube surgically fitted to give nutrition directly to the stomach, as she aspirates on her food and drink which leads to regular hospital admissions for chest infections and other serious illnesses.
At nearly 2 years old, Charlie is still a very sick child who spends lots of time in hospital and going to appointments in hospitals across the country. She takes multiple medications throughout the day and night to keep her medical conditions under control and ensure she is comfortable.
Despite being so unwell, Charlie always has a huge smile on her face alongside a cheeky sense of humour. She takes the world in her stride and can take on challenges that seem impossible for such a small human to achieve. Because of Charlies additional needs, she requires lots of specialised equipment from a custom car seat, adapted clothing to made to measure walking frames and anything in between. Some of these items are provided through the NHS, but many are not and these items can cost thousands of pounds.
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