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Home 2018-03-14T19:26:08+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

OLIVIA IN THE PRESS

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!

Tree Hope Fundraise for Olivia

On January 28, 2018- Royal Parks 10K run took place in London.

Eight volunteers from our local community joined the race to raise money for Olivia’s equipment needs: Chris Lydon, Jeanette Moran, Sarah Carroll, Upasna Pankhania, Anj Pankhania, Nan-see McGinness, Caitlin Smith, and Julia Boggio-Derbyshire.

Thank you to all the runners for their support !!

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

For any upcoming race- Please create a fundraising Justgiving page for Olivia click here– (follow link to “fundraise for this child”)

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 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 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

RARE DISEASE UK blog post- March 2018

March 27th, 2018|0 Comments

My daughter Olivia is five years old and has a life-limiting condition. It is an extremely rare form of Dwarfism, called Goldblatt syndrome. Olivia is the 18th child diagnosed with this condition worldwide. Olivia’s symptoms [...]

Royal Parks 10K run- January 2018

March 14th, 2018|0 Comments

On January 28, 2018- The Royal Parks 10K run took place in Hyde Park, London. Massive THANK YOU to the 10 volunteers from our local community joined the [...]

St. George’s University- Presentation to biomedical students- January 2018

January 21st, 2018|0 Comments

I was asked by Professor Sahar Mansour at St. George's University Hospital, London, to speak to 20 biomedical students on January 23, 2018 to discuss the difficulties Olivia has faced as a child with [...]

Climbing Mount Everest- “Olivia in Action”

January 20th, 2018|0 Comments

Please enjoy this movie created by a dear friend, Frédérique Warner-Allen, which offers a glimpse into Olivia's daily life.

Tree of Hope Charity Fundraise

January 10th, 2018|0 Comments

Thank you to everyone who has supported Olivia in acquiring her electric Koala wheelchair by Permobil in 2017. It has brought Olivia so much confidence and joy. Her face lights up whenever she uses [...]

Saatchi Gallery Lego Show

January 6th, 2018|0 Comments

We had a fantastic time at the Saatchi Gallery in London for the BRICKLIVE Lego exhibit. The girls spent 3 hours building legos amongst a large group of [...]

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we have a strict no-spam policy