When I was first diagnosed with Heart Failure, I was lost, I didn’t know what to think and expect. Like most of us kids, I never imagined that medical issues this severe ever existed in people who were my age or younger. I spent 4 months in hospital and have gone through multiple surgeries. I am currently the youngest person in Hong Kong to have a mechanical heart (LVAD) and I am 17 years old.
The one thing that I always was and will never stop being is POSITIVE. The power of positivity is unexplainable, it just gives you so much hope when you’re in a bad position and at the edge of life,why think negatively. I wasn’t able to walk 10 metres at the end of August 2016 when i was first diagnosed, now I can be out on the streets walking around like theres nothing wrong with me. Its all about the mindset. If you’re negative and upset about the situation you’re in, negative and sad things will happen. You probably won’t recover because you don’t see a reason to recover and you’re not seeing the bigger picture of what life is and how valuable it is. We’re all young and have so much to look forward to. I want to travel the world, accomplish things and have fun. Staying healthy is a priority, I used to play Rugby and Football couple of times a week and I hope to one day go out onto the field again and kick a ball around. My heart condition hasn’t stopped me from going to the gym, I can still do cardio and lift weight but all at a controlled amount. Please check out my blog - www.lifeat15percent.com - to follow my story!
I must say that the people who played the most important role in my recovery were my Mum, Dad and Sister as well as the rest of my family. They have been nothing but supportive and positive. For my parents it was really tough, they thought they were going to lose me at one point and that made me so weak. I couldn’t stand them being so upset and I turned that into positivity by telling myself that I had to fight for my life.
I would like to thank the staff of Queen Mary hospital, wards - D4,D5 and C5. I would also like to thank my Doctors for making sure I was always in a stable condition and staying away from risk.Details
The Value of Life, Walking Against the Wind - Damian & Lucy
Self-confidence inspires talent, shine brightly on the path of growth - Ayla
In the journey of life, there are moments that can shape our confidence and courage. For 5-year-old girl Ayla, learning to dance has become an important part of her growth and self-discovery, a milestone in her journey.
Since the age of 3, Ayla has been filled with curiosity and passion for dancing. She dances to the rhythm of music. She joined dance classes, learning various dance styles including graceful ballet and energetic jazz. Every time she steps into the dance studio, she is filled with joy and excitement. However, she also faces challenges and tests of confidence that come with learning to dance.
Wearing beautiful dance attire, she proudly displays the brave scar on her chest, often asked by her dance classmates why she has a long scar. She always shares without hesitation about her surgery during infancy and has learned to be grateful.
Throughout rehearsals and performances, Ayla experiences many difficulties and failures. Sometimes, she may forget the steps or make mistakes. But her teachers are always there to support and encourage her. They tell her that failure is not scary and that every attempt is a learning opportunity. This positive support and encouragement enable Ayla to persevere and cultivate confidence.
Over time, Ayla gradually showcases her talent and confidence on stage. She learns to connect with the audience and finds joy in performing. One of the most memorable experiences was performing at the Parisian Theatre in Macau, where she received enthusiastic applause and encouragement from the audience. For her, the stage is not just a place to showcase herself, but also a platform to express her unique style and personality. Her performances become vibrant and engaging, and her confidence is boosted.
As parents, witnessing Ayla’s growth and progress in dancing fills us with immense pride and gratitude. This journey is not just about learning dance skills, but also about nurturing her confidence and courage. It has taught her resilience in the face of challenges and difficulties and belief in her own abilities.
We hope to share this story with other families to encourage their children to step out of their comfort zones and pursue their dreams. Whether it's dancing, painting, music, or other interests, every child should be encouraged to discover and showcase their unique talents. Such a growth process not only enriches their lives but also builds their confidence and courage, laying a solid foundation for their future. Let us support children's dreams and let them shine on the path to excellence!Details
Overcoming challenges - Jason
Jason's congenital heart disease was discovered during his junior secondary school years. At that time, he experienced a sudden rapid heartbeat during class, and subsequent examinations revealed an arrhythmia condition. He was then referred to Queen Mary Hospital for further evaluation. After several ultrasound and electrocardiogram tests, he was diagnosed with having Supraventricular Tachycardia, a common form of congenital arrhythmia characterized by intermittent rapid heartbeats. "This condition caused concern among my family and school. The school even prohibited me from participating in sports-related activities. Fortunately, with the help of the Foundation and the treatment provided by doctors at Queen Mary Hospital, I underwent catheter ablation surgery during the summer vacation of Form One, greatly improving my condition. After that, I was able to engage in physical activities without worry."
Due to his personal experience, Jason developed a strong interest in Biology and chose it as one of his elective subjects in high school. "My perspective didn't change because of this illness. At that time, I believed that everyone has the possibility of getting sick, and when you're sick, you need medical treatment. It's a normal physiological phenomenon. Of course, besides the arrhythmia, I also had various other illnesses during my growth, which may have sparked my interest in Biology." With persistent effort in studying, Jason achieved excellent results in the Hong Kong Diploma of Secondary Education (HKDSE) examination and became a recipient of the "Academic Award Scheme" Outstanding Award. He then pursued a career in Radiology.
"Radiology allows me to apply the Biological knowledge I've learned. It helps doctors understand patients' body conditions and treatment plans. Although many people don't know what a radiographer is, it is a very important and meaningful profession." Currently, Jason has graduated and is working at a hospital he loves. As he spends more time in the field, he increasingly appreciates the significance of his work. "Sometimes, I feel nervous when working with different doctors, and I need to continue learning and reviewing even after work. I hope to become more familiar with the workflow in the future and help more people."
As someone who has gone through similar experiences, Jason hopes that children with congenital heart disease can face their conditions positively, not overly focusing on the illness, but instead, try to find their own goals and live their own path for the future.Details
The Value of Life, Walking Against the Wind - Damian & Lucy
Damian, Lucy’s son, was born with Truncus Arteriosus. He had to have surgery when he was 10 days old. Unfortunately, he passed away when he was 13 days old. Because of the care that Lucy’s family received in the hospital, they would like to have some positive action, so they organised a fundraising campaign for CHF.
What was the biggest challenge you faced as parents of a child with congenital heart disease?
The stress and uncertainty were the most difficult to deal with. Our diagnosis was not certain during pregnancy; and this left us in a state of constant worry. Then, following Damian’s birth, once we confirmed the diagnosis of Truncus Arteriosus, we felt that opened the door to more uncertainty and worry - When would Damian need an operation? What was the best age and weight? Should we try wait longer, or does this just increase the risk of heart failure? Since Truncus Arteriosus is so rare, and there are so few cases in Hong Kong in particular, it was so difficult to know what was the best thing to do for Damian.
How can you overcome the challenges and the sadness?
After Damian’s passing, we felt quite lost and adrift. Turning our sadness and grief into positive action really helped us. Many family and friends asked what they could do to help; but at the same time, they were often lost for words and also felt awkward and didn’t know what to say. We wanted some positive action to come from Damian’s death. We knew Damian would want to help other children if he could, especially in Hong Kong, which was his home. By raising money for the Children’s Heart Foundation in Damian’s memory, we really felt that we were making a positive difference to the lives of other children, while uniting our family and friends for a common cause.
Why did you choose the Children's Heart Foundation as the beneficiary organisation?
Answer: We felt very fortunate that we were able to benefit from the Kowloon Children’s Hospital in Hong Kong. The facilities and quality of care there were excellent, given the circumstances. COVID-19 made our suffering much worse, as both parents were not allowed to be together with Damian at the same time due to the COVID-19 restrictions. From our discussions with the doctors and nurses there, we asked who or what would be the most valuable organization to contribute to, and most of the cardiologists said Children’s Heart Foundation is the leading heart charity for kids in Hong Kong.
(Editor's note: The Children's Heart Foundation would like to extend its heartfelt thanks to Lucy and her husband for continuing Damian's love by donating his condolences to the children with congenital heart disease.)
What would you like to share with other parents who have experienced the same thing?
Answer: What we would share to any other parents going through the unthinkable is this: it does get easier. It might not feel like it today, tomorrow or next week, but this experience will strengthen you and it will get easier to manage. Also, it’s okay to laugh! When things are really hard and sad, it can feel like there is an expectation from those around you to be miserable all the time, but it is okay and healthy to see the good and happiness around you. Don’t forget to enjoy life!Details
