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Home 2017-11-14T14:27:56+00:00

Thanks for visiting my website! I would love to share with you my journey of having an extremely rare form of Dwarfism. Only 18 kids have it worldwide!

Here you can follow my progress on videos and on the Blog (Mum is writing it until I can write it myself). There is a lot of  information about Goldblatt Syndrome on this page.

Please support my medical equipment needs on the Fundraising page.

LOL from the bottom of my heart.
Olivia xo

A recent article was published by a dear friend, Chris Lydon, on Huffington Post regarding Olivia’s rare disease and the journey we have experienced. You can read it HERE. Please share on your social media channels!

On January 28, 2018- Royal Parks 10K run is taking place in Hyde Park, London.

We are asking for volunteers to join the race and raise money for Olivia’s equipment needs.

Follow us on Instagram and Facebook
#RunforOlivia
She’s a #Girlinabillion and needs your support.

To sign up for the race go to: www.theraceorganiser.com/race-course-map/royal-parks-series-Hyde-park-race-3-January-28-01-2018-09-3

A Justgiving page for donations has been set up here- https://www.justgiving.com/fundraising/runningforolivialugani

A GoFundMe page for donations is set up here- https://www.gofundme.com/run-for-olivia-girlinabillion

Olivia suffers from a rare genetic condition called Goldblatt Syndrome. As a result, due to her neck instability and severe spinal curvature, Olivia experiences from pain everyday. She is unlikely to ever walk independently. Yet, she refuses to ever let her condition define her. We are raising money for her essential equipment needs. Her disability restricts her from many things, so the fundraising success will increase her quality of life.

See the Support tab for a list of equipment, for which your support will help provide.

Lots of love,
Mum x

Our first fundraising event, Fun, Family Afternoon, was held in June, 2017.  We are very thankful to those who supported us on the day. Goldcrest Land generously sponsored the worthwhile event. Our aim was to raise awareness of Olivia’s rare condition and provide an afternoon of fun. Photos from the event depict the joyous occasion had by all. Please see the beautiful photo gallery by Sabbou Photography by clicking on our gallery below. The children’s entertainment was donated generously by PERFORM, Bedazzled Events, and Kelly Sparkles. Goodie bags by Kidsorted, the local black book for families.

GALLERY
Let's keep in touch!

we have a strict no-spam policy

Check me out on video!

Meet my Family

ABOUT ME

I have two sisters, one older and one younger. I am the sandwich in between! They play with me and make me smile when days can be tough. I have a lot of pain everyday and many appointments every week so doctors can check on me. Mommy and Daddy give me cuddles to make me feel better.

READ MORE

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!

READ MORE

Olivia’s Blog

“Wonder,”by RJ Palacio

November 20th, 2017|0 Comments

Dear Friends and Family, I would like to share with you the impact a book has made.  It's called "Wonder," by RJ Palacio. It has had world-wide success due to its impactful message, "If you have [...]

Hydrotherapy Sessions

November 14th, 2017|0 Comments

Olivia has been enjoying private, weekly hydrotherapy sessions with her physiotherapist for 1 year. I was able to attend a recent session and was so impressed with her progress! The confidence Olivia expresses in the [...]

#RunforOlivia

November 10th, 2017|0 Comments

On January 28, 2018- Royal Parks 10K run is taking place in Hyde Park, London. We are asking for volunteers to join the race and raise money for Olivia's equipment needs. Follow us on Instagram [...]

Huffington Post blog by Chris Lydon- “A girl in a billion”

September 30th, 2017|0 Comments

At five years old, Olivia Lugani 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 [...]

Summer 2017

September 26th, 2017|0 Comments

July/August 2017 After much debate on where to spend our summer holidays with Olivia's new electric wheelchair, we finally decided [...]

Fundraising Event- June 2017

June 10th, 2017|0 Comments

Thank you for attending the Fun, Family Afternoon at Hotel du Vin in June, 2017.  We are very thankful to those who supported us on the day. Goldcrest Land generously sponsored the worthwhile event. Our aim was [...]

Let's keep in touch!

we have a strict no-spam policy