Little Henry Boothroyd’s worldwide surgery plan for after rare Congenital Femoral Deficiency diagnosis

From the smile on his face and his rough and tumble nature, Henry looks like any other 20-month-old boy, but he was born with a rare disorder that not even his doctors had heard of before.

By the time little Henry Boothroyd starts primary school, he will have undergone two major surgeries and travelled across the world and back in the process.

From the smile on his face and his rough and tumble nature, Henry looks like any other 20-month-old boy, but he was born with a rare disorder that not even his doctors had heard of before.

It’s known as Congenital Femoral Deficiency, or CFD, and means Henry has a significant difference in the length of his legs due to a defect in his growth plate.

Right now his right leg is 9cm shorter than his left, and is expected to become 23cm at full maturity.

Little Henry Boothroyd.

The current difference in his legs is 9cm.

A built-up boot that brings his right leg in line with his left has become part of Henry’s daily life, helping him to play and run like every other healthy boy – but his parents Hannah and Stephen hope four surgeries in different countries will even out his legs.

For the first-time parents, Henry’s diagnosis, which came when he was four-months-old, was a huge shock.

“It was missed at his 20 week ultrasound,” Stephen said.

“When sonographers look at the baby’s femur, they usually only check one, so we presume that they looked at his left side, which is his good side.

“It took his specialist quite a while to come up with the diagnosis, and even they hadn’t heard of it prior to him, so it definitely came as a big shock to us.”

By seven-months-old, Henry was standing, and the boot gave him a chance at walking and running.

“He copes really well with it and he’s just accepted it as a part of him,” Stephen said.

“He’s a typical boy, real rough and tumble, and he doesn’t let anything hold him back.”

But his parents are determined to help him live a life without his boot – enlisting an expert international doctor to come up with a years-long surgical plan for their son.

Henry, Hannah and Stephen Boothroyd.

The first stop in Henry’s journey will be in Abu Dhabi – where he will undergo a surgery known as SuperHIP at the hands of the surgeon who invented it.

“In Australia, there are few surgeons willing to complete this procedure, and we are confident there is no one who has completed this surgery more than few times,” Stephen said.

“So we made the decision to travel so Henry can have the best outcome.”

Following the surgery, Henry will need three separate lengthening procedures, which requires the implantation of an external fixator. Worn for up to 17 weeks, the fixator is turned every 24 hours, resulting in 1mm of growth per day.

These surgeries will be completed in the US state of Florida – and will require long overseas rehab stints.

Henry in his special boot.

While they will be spread out over several years, the Boothroyd’s plan to have the first two completed before the time Henry starts primary school.

Given his condition is so rare – Stephen and Hannah have started the CFD Foundation to help their little boy and others like him in future.

With Henry’s first two surgeries costing $570,000 the foundation’s first task is raising funds for Henry’s future surgery and recovery.

“The Australian Government will only fund overseas medical treatment if it is deemed ‘life saving’,” Stephen said.

“We would consider the treatment available to Henry ‘limb-saving’ … but our main goal throughout this fundraising campaign is to highlight Henry’s resilience and strength, despite his disability.

To donate to Henry and the CFD Foundation, visit: cfdfoundation.com.au/