My name is Olivia Lugani @agirlinabillion.
I would like to share with you my journey of having an extremely rare form of Dwarfism called Goldblatt Syndrome.
Only 18 kids have this form of skeletal dysplasia worldwide.
I am 11 years old, I weigh 11kg and measure 73cm.
You can FOLLOW my progress on videos, READ mummy’s BLOG about the journey, and find information about Goldblatt Syndrome by clicking HERE.
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Thank you from the bottom of my heart.
Olivia xo
GoFundMe Fundraise for Olivia
Please support me by donating towards my medical expenses
OLIVIA NEEDS YOUR CONTINUED SUPPORT.
Thanks to all of your donations, we have been able to save Olivia’s life. Her spine was collapsing and she was losing all mobility in her limbs. She was in a constant state of unimaginable pain. On February 13, Olivia’s decompression and fusion surgery was a success! The surgery was performed by Dr. David Feldman at the The Paley Institute in Florida, USA. https://paleyinstitute.org/blog/physicians/david-feldman/#/
Olivia and I are extending our stay here to offer her the post-operative treatment that the Physiotherapy team can offer. The recovery plan is very expensive and we are asking for continued donations to pay for some of it.
To make a donation, please go to https://gofund.me/a227e3b9
All proceeds from her fundraising page will be used to pay for Olivia’s medical expenses.
We will forever remember everyone who helped give our dear Olivia (@agirlinabillion) a chance to live the life she deserves.
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Olivia suffers from a rare genetic condition called Goldblatt Syndrome. Yet she refuses to let her condition define her.
The Syndrome
WHAT IT IS & HOW I DEAL WITH IT
I’m an extremely clever girl, but I suffer everyday from pain. The main symptoms of Goldblatt Syndrome are short stature, joint laxity, muscle weakness, narrow chest, and dentinogenesis imperfecta. Mommy takes me to appointments with doctors all over the world to help me feel better. I have Physiotherapy, Occupational Therapy, Hydrotherapy and Play therapy every week!
Mama’s Blog
1 year surgery anniversary!
Our prayers were answered. One year ago today, on February 14, 2023 our precious Olivia @agirlinabillion was at St Mary’s hospital, WPB Florida, recovering from life-saving, spinal fusion surgery. We were so blessed to be [...]
Update 7 months post surgery
Dear Friends, We would like to update all of you who supported our daughter Olivia this past year. Olivia is now fully recovered from her spinal surgery in the US. We spent the summer as [...]
Family time in Normandie, France.
First holiday together since departing to the US for Olivia’s surgery in October 2022. We are so happy to be reunited. One year ago we were told by Olivia’s doctors at Necker hospital in Paris, [...]
The Healing Bridge
The Healing Bridge We are overcome with gratitude for the successful surgical intervention of Dr David Feldman and his team at @PaleyInstitute. From Day 1, when we first met Dr Feldman, he insisted that Olivia [...]
Week 3 post surgery
Dear Friends, Dr. Feldman made the impossible POSSIBLE! Olivia's spinal surgery on Feburary 13th was a success! After 3 wks of 24/7 dedicated care, Olivia is 80% recovered! Thanks to Dr Feldman. He has been [...]
Day 8 post surgery
Day 8. We’ve reached the other side of the steep hill we climbed! The pain is certainly still severe, but managed much better. More smiling and more fun, family times. We are overcome with gratitude [...]
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