Emma's High Sided Cot and Specialist Equipment Fund
Emma was born in January 2014 after a long 4 days of labour. To begin with she seemed normal and we left hospital the next day. However shortly after returning home it became apparent that she was struggling. She couldn't suck and didn't swallow her milk. She couldn't feed from a bottle and started to drop weight. At 13 weeks she was admitted to Birmingham Children's Hospital and it was discovered that she couldn't suck or swallow and so she had to be fed by a Nasogastric tube. She has battled for the past 11 months struggling with chest infections and illnesses constantly.
She was diagnosed with an unsafe swallow and silent aspiration leading the neurological team to do more tests. She is at constant risk of Aspiration Pneumonia and has to be supervised constantly. She also needs to sleep on quite a steep incline as it is unsafe for her to sleep lying flat. She is awaiting surgery for a gastrostomy to put her tube into her tummy making it more pleasant for her and hopefully reducing the incident of URTI.
She has recently been diagnosed with Worster-Drought Syndrome a rare form of cerebral palsy that affects her swallowing and speech mainly. It is only present in 1 in 100,000 births in the UK. Emma has an uphill battle ahead of her to be able to communicate and feed herself. She may also struggle with mobility and coordination as she grows.
We are completely heartbroken and the only way we can see to move forward and help her is to raise vital funds for her on going medical needs and adaptations to our home to make her life easier. We are desperately trying to raise the funds to buy Emma the specialist high sided cot that she needs to be able to sleep safely and comfortably. This bed would make such a huge difference to Emma's life and reduce the amount of chest infections she's getting due to aspirations during the night. The cot she needs is very specialized and is not available for NHS funding.
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