Help Henry Get One Step Closer
Running Rare #300 - Dedicated to Henry
If your child needed limb-saving surgery, would you choose a subsidised procedure with a pool of surgeons who had performed between them only a handful of similar operations—or pay $600,000+ for the chance to work with a world-leading surgeon with a thousand successful surgeries to their name? For Stephen and Hannah, this is not a hypothetical dilemma—it is a heart-wrenching reality.
On the 30th of October 2023, I received a message from Stephen. My connection with Stephen is a little convoluted and difficult to explain. But here it goes!
Stephen is the husband of Hannah, an extended relative of Jess’ — how many degrees of separation I am not quite sure. Close enough that I had met Stephen and Hannah on a few occasions. Distant enough that his message came as a surprise.
In his message, Stephen explained how he and Hannah had been searching for support from a rare disease charity. They had come across Rare Voices Australia, an organisation I have been an ambassador for since 2020, and were wondering if I had time to talk.
The next day, Stephen shared with me the reason for reaching out. Henry, his firstborn, had been diagnosed with a rare condition known as Congenital Femoral Deficiency (CFD). He explained that CFD is a rare birth defect that results in a shortened femur (thigh bone). As Henry grows, the difference in the length of his legs will become more significant. His specialists anticipate that without intervention, the difference by full maturity will be approximately 23cm.
Due to the rarity of the condition, and the complexity of remediating surgery, the most common pathway for children with CFD in Australia is an above-the-knee amputation. Fortunately, before being offered this typical pathway, Stephen and Hannah began a global search for someone that might be able to help Henry.
This search led to a call with a Canadian trained orthopaedic surgeon named Dr. Dror Paley. Paley, who operates out of West Palm Beach, Florida is considered a world-leading expert in deformity reconstruction and limb lengthening surgery. During the call Paley presented the an alternative to amputation - a surgery he had invented in 1997 called SUPERhip.
The SUPERhip surgery has the chance of being limb-saving, but will involve several trips overseas to undergo intensive operations to both correct the deformity and lengthen the leg. The entire treatment process is likely to cost in excess of $600,000.
Sparked by the hope that something could be done to help Henry; Hannah and Stephen began looking for government or charitable support. However, they were faced with a roadblock. Given that the operation was both not deemed ‘life-saving’ and was going to be conducted overseas, they were met with dead-end after dead-end. Nobody seemed willing to help and if they did, they lacked the financial mechanism to support them. So Hannah and Stephen were left with an excruciating decision.
Hannah and Stephen have been tirelessly working to organise fundraisers for Henry. You can keep up to date at the CFD website and on their socials.
With community support, Henry’s journey toward life-changing, limb-saving surgery, is possible. Please consider donating via the CFD Foundation website to help him take the next step.
Since 2020, I have been running to raise awareness of rare diseases through my passion project Running Rare. I am working through each known rare disease listed on the National Organization for Rare Disorders database alphabetically and dedicating a run. I am approaching 300 runs and you wouldn’t believe which condition is exactly 300th - Congenital Femoral Deficiency! The very condition Henry was diagnosed with.
My goal is to complete this run at the Hands Across Canberra Fun Run on Monday, 10th March. So, if you’re in Canberra and up for a 2.5km, 5km or 10km run or walk on the Canberra long weekend I would love it if you could join me!