Member Stories

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Amelia congenital heart disease

Amelia Lee marathon race 2020

Amelia on Mount Kinabalu


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Name: Amelia Lee
Age: 14
Conditions: Tetralogy of Fallot (congenital heart defect), history of multiple open-heart surgeries, eczema and allergy to tree nuts 
Wears: Sports Band and Heritage Bracelet

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“Sport is a part of me and I just love it! Being born the way I am gives me the opportunity to appreciate everything. I pursue my dreams until they come true.”


We spoke with Shelly, Amelia’s mum, who told us this amazing story of a real fighter:

The doctor discovered Amelia has a loud systolic heart murmur when she was only 6 weeks old. She was referred to a local hospital in North London for further examination. The paediatrician confirmed that Amelia had a grade 5 systolic murmur called Tetralogy of Fallot. The hospital issued an emergency card to Amelia and also arranged for her to be examined by cardiologists at Great Ormond Street Hospital in London.

Further on, little Amelia had to face open-heart surgery multiple times: the first time when she was barely 6 months old to close the hole in her heart so she stopped turning blue, then again when she was 3 years old to scrape off some muscles underneath her heart valve because she got tired easily - she relied on her buggy to carry her or someone to cuddle her. A second open heart surgery allowed Amelia to engage in a variety of physical activities more comfortably. After her second heart surgery, she could play, swim and run around with other children.

When she was 8 years old, Amelia started having a sharp pain in her little heart. She was scared to breathe, because the pain was more severe than before. After multiple tests and scans, results showed that Amelia's irregular heartbeat needed to be treated and would require further heart surgery. This time it was keyhole heart surgery. Once again, this was performed at GOSH, London.

Amelia's condition required constant monitoring. These surgeries, and a big thank you to the Great Ormand Street Hospital Cardiologists Team, has allowed Amelia to pursue her ambitious goals. From participating in running races to hiking the highest mountains in South East Asia, from swimming to biking, basketball and dodgeball or travelling for sports competitions; Amelia has a great passion for adventure and sports. You can read more about her sport journal here - it is updated frequently!

“I love sport. It’s a part of me and I just love it! My mum helped me and supported me when I was first getting into sports. Being born the way I am gives me the opportunity to appreciate everything. I pursue my dreams until it comes true. One of these dreams was hiking on Mount Kinabalu in Malaysia, 4095m above sea level. I was the first kid with a congenital heart defect to climb such a high mountain with altitude above 4000m. I am so proud of myself! I was inspired by what Scott Fisher said in the movie The Everest - it's not the altitude, it's the attitude.”


When Amelia was in primary school, her mum decided that it was time for to wear a MedicAlert ID bracelet. She explained to her daughter why she needed it, so Amelia would understand it was for her safety.

Growing up, she started hiding her bracelet because she felt like a ‘sick child’ every time she was asked about it, which led to talking about her ‘mended heart’. Her mum reminded her that a condition was nothing to be ashamed of: her ‘mended heart’ helped her to fulfil her dreams, such as completing triathlon races, fun races and fundraising for other children with congenital heart defects. Shelly also explained to her daughter how MedicAlert allowed her to achieve all these amazing things. 

Amelia knows only too well how important it is for healthcare professionals to be aware of all her medical information in the event of an emergency. Wearing her MedicAlert bracelet can be lifesaving, as it is the key to all her vital data. Spending most of her time at school and sports clubs, she is wearing her MedicAlert bracelet for her own and also her parents’ peace of mind. The reassurance MedicAlert provides makes her feel unstoppable, as nothing can get in the way of her dreams!


"MedicAlert allowed Amelia to achieve amazing things, keeping her safe whilst doing sport or hiking one of the highest mountains in South East Asia - the Mount Kinabalu in Malaysia, 4095m above sea level. Her sport coaches don't need to remember her medical conditions by heart, they just need to call the number in case of an emergency. And, no matter how well I prepare myself, when an emergency happen unexpectedly, panic often leads me to struggle to communicate. Thanks to her medical ID bracelet, even if I'm in shock and unable to explain Amelia's medical history, MedicAlert is there to help me."

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If you believe that your story can help others to understand the benefits of MedicAlert, please let us know!


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