In Loving Memory of Baby Rylee, a SWAN ( Syndrome without a name) Baby

Her 18 month journey…...

Rylee Ko was our beloved daughter who was born with SWAN Syndrome (syndrome without a name) on 26 Feb 2014. She was a complicated baby since birth.

obstructive airway
low muscle tone
serious reflux
Clift palate
conductive hearing lost and so on

In her life, she had been through so many treatments, operations and tests, countless scans, x-rays, MRIs, EGGs etc. but none can help to identify her condition.

She’s been staying in Starship hospital, Auckland, New Zealand for most of her life and only a few months at home. She was very easy to get sick due to the trach she had, as virus is more direct to her lungs.

She was tough and resilience, unfortunately she was struck by two different virus in two weeks time when she was 17 months old and declared brain dead after 4 weeks of fighting. After consulting with the doctors from Starship, the decision was to turn off her life support on 22 Aug 2015.

Other than Rylee’s resilience spirit, the most incredible moments are the professionalism and the dedications the hospital staffs have provided for Rylee since her birth - NICU, PICU, Longer Term stay Level 6 and Level 5. To my surprise, the room condition on the 5th floor doesn’t compliment with the staff’s professionalism. In my opinion, a refit is required.

To remember our tough, resilience and beloved daughter, we have set up a fundraising especially for Starship Hospital to refit their wards on level 5.

We love her, miss her always. She will always in our hearts and sweet memories lives on.

Rylee Fund Facebook
Facebook page:   / ryleeko