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Home2018-08-11T07:28:06+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!

You can FOLLOW my progress on videos, READ mummy’s BLOG about the journey, 

and find 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

OLIVIA IN THE PRESS

A HUFFINGTON POST article was published by our dear friend, Chris Lydon, regarding Olivia’s rare disease and the journey we have experienced. You can read it HERE. Please SHARE on your social media channels!

Tree Hope Fundraise for Olivia

In January 2018, Royal Parks 10K run took place in London.

Volunteers from our local community joined the race to raise money for Olivia’s equipment needs. Thank you to all the runners for their support !! Chris Lydon, Jeanette Moran, Sarah Carroll, Upasna Pankhania, Anj Pankhania, Nan-see McGinness, Caitlin Smith, and Julia Boggio-Derbyshire.

FOLLOW US on Instagram @agirlinabillion

FOLLOW US ON FACEBOOK: olivia lugani

For any upcoming events please create a fundraising Justgiving page for Olivia click here– (follow link to “fundraise for this child”). 

She needs your support.

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. The fundraising success will increase her quality of life.

Go to the SUPPORT tab for a list of equipment, for which your donation will help provide.

Lots of love,
Mum x

 Fun Family Afternoon in June 2017

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
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Check me out on video!

Meet my Family

ABOUT ME

I have two sisters, one older and one younger. I am sandwiched in between! They play with me and make me smile when days can be tough. I have a lot of pain and many doctor’s appointments 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

Let's keep in touch!

we have a strict no-spam policy

I agree to have my personal information transfered to MailChimp ( more information )