Corset Mould Fitting
Olivia, the Champion! So proud of my girl! She conquered yet another gruelling 45 minute experience of plastering a thick mould to her upper body in order for the fantastic team at Hospital Poincaré, [...]
Endless search- Fundraiser- PERMOBIL TWIST
Dear Friends, I've been searching for years for an adapted manual wheelchair to assist Olivia with manoeuvring around the apartment. Since moving to France, some doors have certainly opened, but I have to bang [...]
May 2020 – Coronavirus- #Stayhome, #Staysafe, #Quaranteam #Restezchezvous
Greetings to all our Friends and Family around the World. May 2020 We wanted to let you know our family is doing well as we #STAYHOME for the 10th week of [...]
Genetic Testing – The Endless Pursuit
FEBRUARY 2020 •As many of you know, Olivia has a rare genetic condition called Goldblatt Syndrome that affects only 17 other known patients world-wide. She is 7 years old, weighs 10kg and [...]
Our New Normal- Life in Paris- January 2020
Life in Paris Our move to Paris came as a welcomed surprise in Summer 2019. After extensive research, we made an informed decision to select a french school in [...]
The Day after the Storm
Today is the day after Olivia's difficult experience of enduring her second bone strengthening Bisphosphonate treatment at Evelina Children's Hospital. These are the thoughts that pass over me. In the weeks leading up to the [...]
Bisphosphonate Treatment, Evelina Children’s Hospital
Olivia's biannual Zoledronic acid treatment today at Evelina Children's hospital. After 3 attempts, they finally found a vein for the cannula. So painful, poor thing. Momma bear on duty! Olivia, the superstar, doing great [...]
Rockstar, Olivia! MRI exam @ Nicklaus Children’s Hospital
My superstar, my angel, my rockstar, Olivia Lugani, spent 3 hours in a 3Tesla MRI machine UNSEDATED at Nicklaus Children’s Hospital in Miami, Florida so that doctors can accurately assess her severe spinal curvature. The [...]
Dr David Feldman, Paley Institute, Florida
Olivia and I spent 5hrs at the Paley Institute in West Palm Beach, Florida on Jan 2, 2019 visiting the world-renowned spinal surgeon, Dr David Feldman. First question he asked me when I gave him the [...]