To remember our tough, resilience and beloved daughter, I would like to do fund raise especially for Starship hospital to refit

Rylee Ko was our beloved daughter who was born with SWAN (symptoms without a name), she was tough and resilience, unfortunately when she turned one and a half years old she was strike by a cold and was declared brain dead. After 4 weeks of fighting , we lost it this time. After consulting with the doctors from Starship, the decision was made to turn off her life support. (Today 22/8/2015)

In her life, she had been going through so many treatments and tests, countless scans, x-rays, MRIs, EGGs etc.

She’s been staying in Starship hospital for most of her life and only a few months at home. As a dad, I have gone through a lot with her, countless ambulance trips, worrying nights in ICU, sleepless nights in the wards.

Other than Rylee’s resilience spirit, the most incredible moments are the professionalism and the dedications the staff have provided, especially those from the 25b 26b and PICU. To my surprise, the room condition on the 5th floor doesn’t compliment the staff’s professionalism. In my opinion, a refit is required.

To remember our tough, resilience and beloved daughter, I would like to do fund raise especially for Starship hospital to refit their wards on level 5. (Fund will go directly to Starship Foundation for so you can get a tax credit for the donation - and I will try to work with them to make the fund use for the right clause )

Personally, I will match every single dollar received from this activity for up to ten thousands to remember our tough, resilience and beloved daughter, I would like to do fund raise especially for Starship hospital hope they will use the fund to refit their aged wards on level 5 25b. She spent most of her time in 26b and 25b but 25b is aged.

Letter from Mommy

Dear Rylee,

Do you know you have changed the world?

Even though your life was so short, you have forever changed this world.

Your story started with an uneven pregnancy until 33 weeks. You were small in size for your gestational age and had stopped growing inside my tummy when the placenta wasn't functioning well. After two weeks of strict bed rest for Mummy, you were born at 35 weeks by c-section, weighing only 1.6kg. Straight away, you were put in the incubator and sent to NICU. Mummy and Daddy couldn't even cuddle you.

You then spent 10 whole weeks in NICU to resolve your breathing and feeding problem. You had airway obstruction which made it difficult for you to breathe. A tracheostomy operation had to be performed when you just reached 4 weeks old. You became the only trach baby in NICU after so many years of not having one there. The smallest trach were still too big for your 2kg body.

You also had severe reflux problem where your stomach couldn't tolerate any food. You would vomit constantly and the doctors had to push your feeding tube further down to the small intestines. You had to be continuously fed for 20 hours a day by a feeding pump and only a small amount allowed per hour so you would be able to keep your food down.

Day after day, the doctors found new things that were wrong with you. All tests and analysis were done but no diagnosis reached; as all the results came back normal. You were officially a SWAN baby (syndrome without a name). To me, the name SWAN perfectly describes how I see you in my eyes, perfect and beautiful, just like a swan.

Next, you were transferred to Starship Hospital for another 8 weeks; where we learned how to take care of you. You required frequent suctioning. We were taught how to change your trach and trach ties, and trained what to do in case of any emergencies. This was all new to Mummy and Daddy; but throughout all this, you remained such a sweet and strong baby. You kept on smiling no matter how hard it was for you.

But your hospital stay didn't end here. It was so easy for you to catch any type of virus that you had to keep going back to the hospital. Finally, you came home with us in September 2014, after almost 6 months in the hospital. You have shown us how much you loved life and how strong you were. I was so proud of the fact that you maintained to be a healthy baby for 10 months at home. There were no hospital trips caused by any illnesses during this time. Your happy little face made my life complete. You were, and you are, perfect to us.

However, life would never be the same again when you fell ill again at the end of June. You spent 11 days in PICU and needed the ventilator to help you breathe. We were told you had pneumonia which could take your life away. But you proved the doctors wrong. You put up a fight and slowly recovered and were able to go back home briefly before getting ill again and back into PICU. This time, you never made it home. You must have been too tired from fighting all those viruses constantly and you decided to shut yourself down. We were devastated and shocked. Mummy and Daddy had to say goodbye to you on 22 August 2015 so that you could gain your wings, fly freely and up high like an angel.

Life with you was a challenge one with many obstacles and hospital stays. But, having you had been the biggest blessing that I have been given thus far. You taught me life lessons that I will forever hold dear until the day I pass. You taught me to live my life day-by-day because each day is a gift. Your illness has shown me how strong I am and my capabilities. Never would I have known I have the ability to hold back tears and put on a smile when doctors give me bad news. I became an advocate for my baby in ways that I have never imagined I need to . Thank you for being my daughter, even if it was for a short time.

The sweetest memory will be in my heart forever.

Miss you dearly,

Mum