As we prepare for Olivia’s Big surgery on Monday, Feb 13, I’ve asked her if she has any questions about what’s going to happen.

The two most important things she’s asked are 1- will I be able to walk after surgery and 2- Can I go back to school with my friends? I’ve always been honest with her. We Hope but don’t know yet. The Doctors are doing everything they can to make that possible.

Her body is going to change drastically. That’s for sure. Post surgery, we know 1- her back will no longer be deformed (scoliosis corrected) and 2- she will be able to sit upright without pain. 3- her organs will be less impacted.

In her 10 years of life, Olivia has never been able to walk. Even standing upright is a difficult task. I’ve fought her entire life to offer her the best quality of life possible.

We left France because no one would treat her there. Thank God for Dr Feldman and his team @paleyinstitute. From Day 1 he said he wanted her to enjoy life like a 10 year old should! Since arriving in the US we have moved 7 times, spent 6 figures in medical bills and living expenses, lived in isolation far apart from Papa Bruno, sisters Gabriella and Carolina, and most importantly, offered Olivia the best medical care we could offer.

The rare disease journey is surely not an easy one. All we can say is Thank You. We’re grateful that you’re on board with us! On February 13th – Surgery Day AND My Birthday, Stay Tuned!

Love, Stephanie xo