Help our Lucy stand tall - Lucy’s Scoliosis Journey

In October 2019 our world turned upside down when our healthy, active and sporty 13 year old daughter Lucy was diagnosed with the serious and progressive spine deformity Adolescent Idiopathic Scoliosis. Having never heard of it before, we have fast come up to speed on what this means and how it will impact her life.

This is a life changing diagnosis for which there is currently little public awareness. It takes parents and patient by surprise since it most often doesn’t show itself until the child grows, if you happen to detect it at all – New Zealand does not have any form of national screening yet it affects 3% of the population.

Idiopathic scoliosis does its initial damage silently below a child’s threshold of pain with no outward physical symptoms to indicate the deformity taking place, making preventive treatment difficult. The only treatment option in NZ is a one-size-fits-all invasive surgery should the child reach a threshold of spine deformity (measured as a Cobb angle of 50 degrees). It is anticipated that Lucy will not reach surgical threshold, yet leaving her with a twisted rotated degenerating spine. There are no other solutions in New Zealand and very few worldwide. Projecting forward it means a lifetime of pain/discomfort and increasing disablement. We find this unacceptable for any human being, not just for Lucy but for the many others who suffer from this.

After copious hours of detailed research for all forms of treatment (surgical and non-surgical) both nationally and internationally, we have found a treatment clinic in San Jose, California achieving nonsurgical ground breaking results second to none. Starting with targeting the underlying cause, they are revolutionizing the future for idiopathic scoliosis with methodology they plan to spread worldwide. Our hope is that we will have this resource in New Zealand in the future but for now patients need to fly to the United States for treatment. This approach is not for everyone. The physical demand for home therapy plus repeat visits to the clinic for intensive treatment is enormous. However it is a challenge Lucy has already set her mind to and is 100% committed. Like the other 7 NZ children currently getting this treatment, she is prepared to step up and fight for her health. As parents we are prepared to do whatever it takes to provide this opportunity of a basic and decent standard of living for our daughter.

The specific treatment goals are to (1) regain control and mobility of Lucy’s spine, (2) permanently reduce curvature from Cobb angle of high 30’s to under 20 degrees, & (3) avoid the high chance of living with daily discomfort/pain and ENABLE Lucy a healthy adult life.

You can research the treatment here: www.scoliosiscarecenters.com. Please direct any questions regarding medical methodology or scientific proof directly to the clinic since they are specialists in this complex spinal deformity.

As a super sporty kiwi kid, Lucy’s dream is her continued enjoyment in high level sport, namely representative level tennis, plus playing netball, volleyball and participating in Taekwondo.

Life throws curve balls that are not planned for. The cost of this treatment is not covered by the public healthcare system and is currently beyond our means. Asking for help is unfamiliar territory for us, yet given the circumstances we are reaching out to ask for your financial support. This treatment relies on a definitive timeframe in regards to a teenager’s growth. We have a small window of time to work with as Lucy’s spine grows. Lucy needs to be in San Jose, California to start 3 weeks intensive treatment by January 27th 2020. From the bottom of our hearts we thank you for your help on this journey moving forward. Xx