A few weeks ago, in late August, we noticed something had changed about our daughter’s back.

Our little girl, Rosie, is eleven. She is a magic little kid who prides herself on being filled with joy in every moment. All she ever wants to do is make other people feel that too. She loves drawing, creating her own characters and stories, making animations of her hopes and dreams, and just being a wonderfully silly and kind little human who wants nothing more than to hug everyone she meets.

We have been exceedingly fortunate that she has always been very strong and healthy. Everything was totally normal for a girl her age, until over a couple of weeks at the end of summer, we watched her posture slowly change in a way we couldn’t explain. One shoulder started sitting higher than the other, and when I traced her spine, a clear curve began to appear where there had been nothing just weeks before.

By September, after seeking out a specialist and a second opinion, we had an answer we weren’t prepared for: severe, rapid onset adolescent idiopathic scoliosis. She has two dramatic curves in her spine, measuring 64 and 62 degrees. For context, doctors typically begin discussing surgery at around 45 degrees as the deeper the curve, the higher likelihood that it will affect her heart and lung function. She is already deep in that danger zone. Her doctor advised that without immediate intervention, she would face permanent disability and disfigurement in a matter of months.

What happens next

Rosie is still growing, which is both the hardest part and the most hopeful part. Growing means her curve can worsen quickly, but it also means there’s a window where treatment can make a significant difference.

Right now she’s starting with a custom back brace, worn as close to around-the-clock as she can manage, along with specialized physical therapy. This is emotionally and physically hard for any child, but will be more-so for her as she also struggles with sensory processing issues and has a very hard time with anything tight or constrictive. This means she will need a lot more support and help managing than many other children in similar situations.

Her surgeon is hopeful this buys her time, but has also been honest with us. Given how severe her curves already are, spinal fusion surgery is not optional, it is inevitable. She will have to have pins and rods attached to her entire spine to stabilize it. Recovery can take up to a year.

What insurance covers, and what it doesn’t

Here in Portugal, we do have access to the Serviço Nacional de Saúde, which is Portugal's tax-funded, universal public healthcare system. The unfortunate part of this is that due to the severity and time constraints of Rosie’s condition, we cannot wait the possible year or two it would take to go through the SNS system. Thankfully, we have always carried private health insurance here in Portugal, and we’re grateful for it. It will cover a meaningful part of her hospital care, but it doesn’t cover everything, nor does it help with added life costs:

The current estimate of immediate out-of-pocket costs will already well-exceed our savings and available financial resources.

If we are forced to switch from private to public, we lose any control over timeline, facility, surgeon, or ancillary care. Given the severity and speed with which it is progressing, we have been advised by our Spinal Specialist, that this is not a viable option.

Why we’re asking, when we never thought we would

This is the part that’s hardest for me to write.

For eighteen years, the many forms of my consulting and coaching business have supported our family. It’s been our sole income, and it’s work I’m deeply proud of. I have helped hundreds of people create thriving businesses using generosity and integrity as hallmarks of their work in the world. But this year, my industry has taken a sharp downturn for all the reasons you already know (ai, politics, economy, etc…), and at the same time, I’ve been dealing with chronic health challenges of my own. So the business that carried us through everything is struggling, and it’s struggling at precisely the moment when our daughter needs us to be able to say yes to whatever her doctors recommend.

Watching my beautiful little girl’s body change shape before our eyes is terrifying, and we are doing everything we can on our end. We’re not asking anyone to solve this for us. We’re asking for help closing a gap so that the decisions about Rosie’s care get made by her doctors based on what’s best for her spine and her future, not by us based on what we can afford that month.

Every contribution, of any size, genuinely matters. So does sharing this. If you can’t give, passing this along to someone who might is just as valuable to us.

We’ll keep this page updated as Rosie moves through treatment; the good news and the hard news both. Thank you for reading this far, and for caring about our girl.

With love and gratitude,

Rosie, illana, and Scott