September 7,2022

For the past 2 months I’ve felt like a race horse at the starting gate awaiting the clanging sound of the gates slamming open. On July 21, 2022 we were told by a Neurosurgeon at Necker Hospital that Olivia had to urgently have surgery to fixate her collapsing spine. She could no longer sit upright, could not attend school, and had to have a halo affixed to her skull to immobilise her spine. All of this information was divulged with such urgency, that Olivia would become paraplegique if we did not intervene quickly. As all of this critical information was absorbed in our minds, the summer family holidays began. I embarked on researching all the possible solutions to support Olivia’s spine from a less invasive , non surgical viewpoint, with the least amount of suffering possible. Step by step, I told myself.

My mind shifted from seeing Olivia as my daughter, to my patient. I reviewed the 1000s of pages of files I compiled in her 10 years of life and strategized with her London and US-based doctors to develop a plan. Although we now reside in Paris, 7 years of Olivia’s life was spent in London. My heart told me to seek advice from those who knew her best. “A PLAN.” 100% dedication to help Olivia. This has always been our focus supporting our child with a rare disease. Although there is no cure, it is my mission to offer Olivia the best quality of life, full of joy and limited suffering. The battles I fight everyday, the doors I bang on to be heard, the paths I pave to support her heavy medical needs, all lead up to this point. 10 years. 10 years of the blessing of being her mom. 10 years of experience fighting this disease, ‘our disease.’ 10 years of protection mode. 10 years of building lifelong friendships. 10 years of developing a team of world-renowned doctors. 10 years of living with a child of a rare, undiagnosed disease.

Together, Olivia, we will rewrite history.

Love,

Mom