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Annie was born in May 2005 eight weeks early, and with kidney problems and unilateral talipes (club foot).   Before her first birthday, Annie had two corrective surgeries and a successful reposition of her foot.  This however, left her with leg length difference and pain in both her hips and knees.  Her kidneys continue to work well together and are able to provide good function.

When Annie was seven, she was diagnosed with Type 1 Diabetes and was treated by an insulin pump and a Continuous Glucose Monitoring device.  A week after this diagnosis, Annie’s Father died suddenly at work, aged 42.  A postmortem recorded the death as being ‘undetermined’.  Following this news, Annie almost immediately started experiencing palpitations and a feeling of being lightheaded.  It was originally thought that this was down to the bereavement however, doctors decided to carry out an electrocardiogram (ECG) where it highlighted that she had a prolonged QT.  After further tests and monitoring over the summer, Annie was genetically tested and was positively diagnosed as having Type 2 Long QT Syndrome.

Due to the fear that this could be hereditary, Annie’s two older brothers were also tested however, they were found to be clear of the condition.

Annie’s treatment commenced with beta blocker therapy (nadolol), twice yearly heart monitors and once a year stress test.  Regardless of this diagnosis, Annie continued about her daily life with only restrictions on competitive exercise or excessive activities such as going on roller coasters, as well as avoiding where possible, any sudden noises. In May 2018 however, six years after her diagnosis, all this changed when Annie was found unresponsive on her bedroom floor.  This happened three days before her thirteenth birthday.  Annie was blue lighted to hospital and presented with low blood sugar levels which was thought to be down to her Diabetes however, an ECG the following day showed in fact that Annie’s QT interval was 670.  Electrolyte therapy commenced in hospital but after a week was still was very prolonged.  The hospital panel decided that the best course of action would be to fit Annie was an S-ICD

Although it was a difficult time for Annie and her family, she recovered well from the surgery and returned to her normal life … school, shopping, socializing.  She also started weekly badminton classes as she was keen to build up her fitness levels again.  Unfortunately, the attack did leave Annie struggling with depression and anxiety and this is something she is receiving ongoing professional support with.

Annie’s family have played a huge role in supporting her through all this and they have a family holiday to Mexico planned for the Summer 2019 where she will be encouraged to show off all her scars and they will help her celebrate her future.

From the day Annie was born she has overcome so many challenges but no matter what life throws at her, she remains a kind, caring beautiful girl who is permanently smiling through it all.

Her family has a mantra: Knowledge is Power … Unfortunately, many are not so lucky.




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