Kati needs your help

Kati is a beautiful, bright and happy 6yr old girl. She loves butterflies, unicorns and rainbows but most importantly, Kati loves life. She never ceases to amaze us. Her determination and drive are remarkable. However our beloved Kati suffers from an undiagnosed skeletal syndrome, meaning her skeleton is smaller than normal and is also extremely brittle. It has been a very long, hard and excruciatingly painful journey.

Every day is a struggle for Kati, simply being able to take herself to the toilet is an ongoing issue. Kati has an inner strength enabling her to tackle tasks that society takes for granted, yet for her is an incredible accomplishment.

Kati has had double hip reconstruction surgeries and attends ongoing hospital visits for x-rays and multiple tests. Alas, our darling girl is headed for yet more surgeries. Kati was born with Scoliosis with Kyphosis. Steadily over the last 6 years it has become worse and worse. Such that her T11 to L4 coronal Cobb angle measures to 80 degrees, a normal curvature of the spine is 0-10 degrees. She also has a compensatory thoracic curve of 60 degrees. Her spine being to such a degree of curvature means her heart and left lung are shutting down, no longer able to cope with the stress and pressure being applied by the spine.

The specialists in Starship Children’s Hospital would like to go ahead with surgery to attempt to straighten the spine, taking pressure off her heart and collapsed lung. Due to Kati’s brittle bones, there is a 50-100% chance of Kati having severe complications. Kati’s family are grateful for the care they have received from Starship so far.

Kati is a one of a kind and New Zealand doctors and specialists, for all their care, have never seen a case like Kati's before. We are wishing to seek answers, care and specialist opinions from the Spinal Program team at Boston Children's Hospital, in Massachusetts, USA. The Spinal Program team at Boston Children’s Hospital is at the forefront of leading-edge research and innovation and were one of the first hospitals to adopt the MAGEC growth rod system which offers the potential to reduce the number of surgical procedures that Kati has to endure and would improve her quality of life. Through their international referral program their specialists see more than 9,000 pediatric spinal patients and perform more than 300 operations each year. Boston Children's Hospital Spinal program are very familiar with the extreme difficulties of life that Kati faces.

We just really seek answers and the best possible care for our Kati.

Depending on funds raised and specialist conclusions, the surgery will take place in either Auckland or Boston. Wherever the surgery is ultimately performed, Kati faces major, life threatening, spinal surgery. She will inevitably need a heart and lung transplant in the near future. Her condition itself is life threatening. Kati and her family will need a great deal of help and support now and in the future.

Kati's biggest wish is simply to have more time with her family, especially her brother Regan.