Lydia's journey to 2 feet on the ground - Part 2 & 3
To give a little girl her dream of having her own 2 feet on the ground.
Auckland
Lydia - 6yrs old was born with a congenital condition known as Proximal femoral focal deficiency or PFFD. In 2020 we travelled to the US for 11.5 months for Lydia’s first surgery. Lydia's was born with a shortened femur, a small femoral head and an undeveloped hip. Her only surgery choices in NZ were to amputate or rotationplasty. We did not feel that either of these choices would give Lydia the best outcome to live a fully mobile and independent life, so we searched for other options and found the Paley Institute in West palm beach, Florida. Dr Paley felt Lydia was a good candidate for the sling hip procedure and extensive lengthening she gained 8.4cm of length and her femur was straightened. The surgery has been a huge success and Lydia's life has been changed in so many ways.
We are 3 years on from her first surgery and her second surgery date has been set for 10 Oct 2023. Again we are aiming to get another 8cm of length on her femur and this is not a surgery that can be done in NZ as there limited resources and follow up care that would not offer her the treatment she needs to make the surgery successful so we are going back to the Paley Institute in the US.
Her last surgery costs us in excess of $500,000 and we still have more than 2/3 of this debt to pay off (please see our other Givealittle page fundraising to pay off this debt here https://givealittle.co.nz/cause/lydias-journey-to-2-feet-on-the-ground). We now need to raise another $200,000 for her second surgery.
We need all the help we can get and appreciate anyone that donates to us and makes Lydia’s dream come true of having her own 2 feet on the ground.
Lauren Golding's involvement (page creator)
I am Lydia's mother
Use of funds
$200,000 for her second surgery
Latest update
Update on page 31 July 2024
We are reopening this page as we didn’t realise it had closed, Lydia has ongoing medical costs associated with her journey to getting 2 feet on the ground.
Lydia recently completed her 2nd lengthening surgery in the US and we arrived back in NZ at the beginning of March 24. Lydia successfully gained another 7cm of growth that is now 15cm of new both growth from both surgeries. We are super proud of her.
As with many kids with PFFD, Lydia’s knee and hip is unstable and in the last couple months her knee has been contracting causing her to toe walk and she walk with her knee slightly bent. We have been working hard at therapy trying to release this but now realise she with need a knee reconstruction surgery. At this stage we have been told it's a 2 part surgery where the first part can be done in NZ before we fly to the US 8 weeks later for the second part. We will need to be there for about 7 weeks.
We are unsure how we will fund this at this stage and are now looking into fundraising and grant options again.
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