Lydia's journey to 2 feet on the ground

Lydia's Story

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 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.

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.

In November 2020 my Mummy, baby sister and I relocated to Florida so we could get the best medical care from Dr Paley at the Paley Institute he is a world renown Dr for treating patients with limb differences. Unfortunately my surgery is very complex and not avail to me back home nor do we get any financial support from NZ.

Nov 20th, I had my surgery to reconstruct my hip by way of a procedure called a sling hip, and an external fixator was also put on my leg so we could grow my femur bone by 8.5cm, I had 3x daily physio for 16 weeks and am now in the consolidation stage of my treatment waiting for my bone to heal, I still have 3x daily physio sessions at home and a weekly appt at the clinic.

Once my bone has healed, I will require another surgery to remove the fixator and get a rod put in my bone to keep it strong and then intense 3x daily physio sessions for a couple of months to rehabilitate me back to walking unaided before we can return to NZ and I can see my Daddy and other family. Once back in NZ I will still require physio therapy for some months.

These treatments and relocation costs have left my parents with some exceptionally large debts nearly half a million NZD. ($500,000NZD)

I will require another 4 lengthening surgeries approx. ages 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, something most of you take for granted.

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 www.facebook.com/lydiasdream and give us a like.