Our Story
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In October of 2022, we welcomed our first child Henry into the world. When Henry was born, the midwife noticed his right leg was 2.5cm shorter than his left. After an x-ray, we were referred to a different hospital when Henry was 6 days old. For the following 4 months, Henry was treated for Hip Dysplasia, wearing either a Pavlik harness or Rhino brace. During this time we were able receive a diagnosis of Congenital Femoral Deficiency (CFD), also known as Proximal Femoral Focal Deficiency (PFFD).
This prompted us to search online for treatment options which led us to Dr. Paley and the SUPERhip procedure. When Henry was 7 months old we were able to have a Zoom consult with Dr. Paley from the USA. Dr. Paley was able to outline a surgical plan and an estimate on what Henry's leg-length difference will be at full maturity, which is 23cm.
We are thankful that there are surgeries available that can address Henry's hip issues and leg-length difference. Henry has been indicated for 4 separate surgeries; a SUPERHip procedure and 3 leg lengthenings. Henry requires the SUPERHip procedure in late 2025, whilst the lengthenings can occur a few years apart. We plan to have Henry's first surgery at the Paley Middle East Clinic in Abu Dhabi.
When Henry was 10 months old, he received his first Articulated Ankle-Foot Orthoses with a built-up raised component. Every 3 months, Henry either receives a raise or a new boot. With the help of his orthosis, Henry is able to walk, climb and play. Henry has now received his second boot which has a raise of approximately 10cm.
To fund Henry's first 2 operations overseas, we've estimated this will cost in excess of $570,000. Whilst we initially considered starting a GoFundMe page, we wanted to explore whether we could start a charity that could be of benefit to both Henry and others. After many months of research and the help of a friend who works as a lawyer, we founded the CFD Foundation Necessitous Circumstances Fund. Our hope is that it may serve to fund Henry's overseas surgeries and one day extend its capacity to help other families in a similar situation too.
In the long-term, we would love it if we could work with
The Paley Institute to investigate how surgeries like these and the equally important rehabilitation can be offered to patients here in Australia.
- Stephen & Hannah