Sophie’s Story

When she was 9 days old Sophie was taken to hospital. She was being sick almost constantly, and her mum Faith was told it was a dairy intolerance and should try Sophie with soya milk instead.

For a while, things were going well but weaning Sophie onto solids revealed some horrific allergic reactions. Sophie’s eyes swelled, she was violently sick and her skin blotched so she was referred to a Paediatrician and a dietitian.

Faith noticed that around 12 months old Sophie began losing skills that she had developed, like talking and crawling, and she began to nod and roll her eyes. Faith raised her concerns at an appointment and her doctor arranged for blood tests and a brain scan. Four months later Sophie was diagnosed with Rett Syndrome. This, along with other medical problems, means Sophie needs 24/7 care.

“Having support from Jessie May Nurses is like having an extra pair of hands,” Faith says. “They can administer all of Sophie’s medicine which means that I can use this time to take Sophie’s sister to the dentist or choir practice or ballet class. I can even help with homework! The support I get from Jessie May means that my husband doesn’t have to support me for those few hours. It’s so important.”

Sophie’s care needs are so intense that Faith describes her life like a pressure cooker at times. “I can’t sink – my children need me. A Jessie May Nurse will come in and take the weight off to give me a break. Their support is invaluable!”

 

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