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Mikayla our Miracle, Sydney (2026)

08/12/2025

Hi my darling girl, how’s heaven? Do you like playing and singing there? Daddy Mummy and GorGor are all missing you so much. I hope you like what Jesus prepared for you.

My baby, we are going to say our final goodbye to your earthly body soon. We will celebrate your life. We will tell the world how brave you are. We will tell everyone how we should live our lives, just like how you lived your life in full.

You are a very generous person. You like to share everything with other people. Daddy and Mummy have donated your tumour for research. We know you would agree to it. We know you want to find a cure to DIPG and HGG so no other kid will go through the same journey as you. We hope that as a long term survivor, your precious tumour will benefit the scientific research.

Friends and families, in lieu of flowers, if you wish to make Mikayla’s wish come true, please consider make a donation to Mikayla’s GoFundMe page. All raised fund will be used in research and other families in need.

To our beloved DIPG / DMG families, please do not lose hope. Mikayla is a miracle. DIPG did not take away her life. Mikayla’s DIPG was considered as STABLE to her last day on earth. It was the second tumour HGG which gave her all the problems. Miracle can happen to you too.

https://gofund.me/8133a3b00

03/12/2025

Today marked the 8th anniversary of our brain cancer journey. DIPG & HGG

With great sadness, our dear Mikayla has entered into heaven at 12.35pm today. She was welcomed by Jesus and all the angels. It’s the beginning, & it’s the end. Thank you for your prayers & support.

16/05/2025

17/5/2025 - Today is the DIPG/DMG awareness day.

Life has been rough this year. Mikayla started to show symptoms since the beginning of the year. Her decline was rather rapid. She lost her mobility within 4 weeks. Her secondary tumour high grade glioma HGG was spreading to the brain stem.

Mikayla was eligible for a clinical trial which she has completed 3 cycles to date. The latest MRI scan shows the tumour is somewhat stabilised. And her decline seems to have plateaued as well. However, she does suffer from some drug related side effects. She lost 90% of her hair. She has high blood sugar, mouth ulcers, diahorrea, lost of appetite etc. It is not a pleasant day everyday….

We organised an early birthday party for Mikayla. She was longing to have a party with her friends. We are very thankful that we have some great people behind the scene to make this wonderful party to be a success with only 4 days preparation. Mikayla had a really great time and she was exhausted at the end of the party. Thank you for those who attended the party, and the people who put a lot of effort in organising the party for Mikayla.

Mikayla is now fully wheelchair bound. She has limited writing and drawing capacity. She also has facial paralysis, and part of her tongue is numb. She requires help with most of her daily activities.

Brain cancer has the highest fatality rate acting childhood cancer. The understanding of brain cancer is very limited. Unfortunately more and more children will pass away before a cure is found for DIPG / HGG. Without funding, without research, the cure will never appear. Please spread our stories to your surrounding people. Lobby to the government bodies which they can inject the funding into research. We desperately hope the cure is near.

Please continue to keep Mikayla in your prayers. She is still the same Mikayla despite the physical changes. She is positive, brave, bright, and beautiful. She is STRONG.

05/12/2024

Today marks 7 years since Mikayla was diagnosed with DIPG. A lot of things have happened in the past 7 years, especially in the last 12 months.

Around this time last year, we shared the news of a new shadow on the routine scan, which later was found to be insignificant. However, 3 months later, this shadow was doubled in size. We had no choice but to have a biopsy to confirm this new finding. Unfortunately, Mikayla was confirmed with a second tumour in her brain. It is called high grade glioma HGG, located in the cerebellum. This was likely caused by the radiation she had few years ago for the first tumour. Understandably our family went through another round of emotional challenge because of this new tumour. We consulted with many health professionals, near and far. Since there wasn’t another case of DIPG/HGG we could reference on for our decision making, we could only go by what we thought the best for Mikayla at that moment. Surgical removal was too risky which could result in permanent disability on Mikayla, therefore, we decided to use radiation therapy again this time. It was a full round of standard radiation treatment, 30 sessions. Mikayla tolerated well without much issue.

Post radiation follow up scans showed some changes to the tumour. The reports concluded that the changes were likely due to the radiation effects, rather than tumour progression. Therefore, it is safe to say that the radiation treatment was effective in stopping / slowing the tumour growth.

Since the diagnosis of the new tumour, we managed to go to different places to make some memories. This includes a trip to HK to visit the Disneyland, a camel ride, sand surfing, Sydney Opera House for school performance etc. and of course, we celebrated her 11th birthday!!!

All in all, 2024 is like a roller coaster ride for our family. We are thankful to have many people supporting us and praying for us. We are forever thankful for everyone of you being part of this journey.

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Sydney, NSW

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