Run for Olivia #girlinabillion
Donation protected
I first met Olivia earlier this year and was instantly charmed. At just five years old, she has already faced more challenges than most of her peers. Measuring just 67cm and weighing 9.6kg, Olivia is one of only eighteen children in the world diagnosed with an extremely rare genetic form of dwarfism called Goldblatt Syndrome (also known as Odontochondrodysplasia). As a result, due to her neck instability and severe spinal curvature, Olivia experiences pain every day and is unlikely ever to walk independently.
Goldblatt Syndrome means that Olivia’s medical needs are significant and complex: a typical week will see her undergo physiotherapy, occupational therapy, hydrotherapy and play therapy. X-rays and MRI scans are needed to monitor her neck instability and spinal curvature. Olivia also requires frequent, often uncomfortable, dentist visits.
To help improve Olivia's quality of life and encourage her independence, several home adaptations, including a lift and suitable bathroom, a manual wheelchair, sensory and soft play equipment, are needed. And at school, information technology equipment will give her the opportunity to contribute and learn, just as her classmates do.
To help raise funds I've committed to running the 10K Royal Parks Run on 28th January. I've only been running since August but I'm determined to finish...who cares about timings!
It takes a village to raise a child. With help from our village, our community and beyond, Olivia will thrive. #girlinabillion
Find out more at www.olivialugani.com
Goldblatt Syndrome means that Olivia’s medical needs are significant and complex: a typical week will see her undergo physiotherapy, occupational therapy, hydrotherapy and play therapy. X-rays and MRI scans are needed to monitor her neck instability and spinal curvature. Olivia also requires frequent, often uncomfortable, dentist visits.
To help improve Olivia's quality of life and encourage her independence, several home adaptations, including a lift and suitable bathroom, a manual wheelchair, sensory and soft play equipment, are needed. And at school, information technology equipment will give her the opportunity to contribute and learn, just as her classmates do.
To help raise funds I've committed to running the 10K Royal Parks Run on 28th January. I've only been running since August but I'm determined to finish...who cares about timings!
It takes a village to raise a child. With help from our village, our community and beyond, Olivia will thrive. #girlinabillion
Find out more at www.olivialugani.com
Organizer and beneficiary
Chris Lydon
Organizer
Stephanie Lugani
Beneficiary