Lydia's journey to 2 feet on the ground

My Story (Lydia)

It all started as a normal love story. My Mummy and Daddy met, fell in love, got married and wanted to start a family. Their world then opened up to years of heartbreak as they tried to conceive. After 6 years of intense ivf treatments, medical mishaps and multiple baby losses, I was created. My Mummy and Daddy were so excited, it was a pretty easy pregnancy and I passed all my prenatal milestones.

On 1st April 2016 at 1pm we all went along for my 20 week scan. My parents faces were beaming and then came the dreaded long pause of silence. The room became eerie and my parents started to panic. The sonographer then looked up and said I need to consult with my superior but it looks like something's wrong with your baby's legs. My parents sat in the room for what felt like forever before she returned saying your GP will be in contact to refer you through to the maternal unit at the hospital. My parents were left feeling overwhelmed and confused.

My name is Lydia, Lydia Golding and I was born with PFFD (Proximal Femoral Focal Deficiency), this is a rare non hereditary birth defect that affects the pelvis, particularly the hip bone and the proximal femur which results with a deformed hip and a shortened leg. My particular class of PFFD is so rare that it is probably 1 in 500,000 babies. I was born with a shortened right femur approx. 50%, an unformed hip and a small femoral head.

My Mummy has spent hours on the phone, internet and emails to consultants from around the world. There is very limited information available about my condition. In NZ we travel from Auckland to Tauranga for consultations.

I have worn a prothesis since the age of 14 months, and have managed to walk, climb and play in my own unique way alongside my peers. However, as I grow older, prothesis are becoming increasingly more difficult to make, as my knee is up by my hip and this causes me to walk with a very large dipping gait. This will only become worse as I grow, and in the future will cause me a lot more problems including my back.

I require surgery to reconstruct my hip before multiple lengthening's of my leg can start, with the end goal of having 2 feet on the ground, something most of you take for granted.

It now seems the only way forward is for us to go to the US and get the surgery I need however this comes with very large costs. Our goal is to be there by November this year (2020).

The first surgery I need cannot be done in New Zealand but can be done in America by Dr Paley of The Paley Institute in Florida. I will require 5 lengthening surgeries approx. ages 4, 7, 10, 13, 16, plus a growth plate on my longer leg approx. age 9 to reach my dream of having 2 feet on the ground.

Mummy will take over now. Her name is Lauren.

Lydia has an absolute heart of gold, an infectious smile, and melts people's hearts. We are hoping by sharing her story she will also melt yours and your donations will go towards achieving the very best outcome for our brave little girl, to fulfil her dream of walking with her own two feet.

If you have read this far, we as a family thank you for taking the time to at least hear our plea. If you have donated you have our utmost thanks and appreciation.

For more in depth details regarding the surgeries please feel free to visit our facebook page and give us a like.

Mummy to our beautiful Lydia.

The money will be used to pay for Lydia's surgery/ies in the US, travel and living costs a new prothesis.