Henry Boothroyd is two years old. He was born with a condition called Congenital Femoral Deficiency, which essentially is a deformity in the ball and socket joint of the hip.

There is no known cause for the condition and it is not hereditary.

Stephen and Hannah Boothroyd, Henry's parents, say the condition is very rare, affecting 1 in every 250,000 children, and even rarer when you consider Henry's subtype. In Australia, there are an average of 290,000 births per year over the last sixteen years.

In layman's terms, Henry has one leg longer than the other. Not an insignificant amount like is the norm for most people, but by the time he becomes an adult, it will be 23 centimetres, so close to a rulers length.

Right now, the difference between Henry's two legs is 10.5 centimetres. When he was born, the difference between his left and right legs was 2.5 centimetres.

To live the life of a typical 2-year-old, Henry needs to wear a special boot with a raised platform that is adjusted every three months in Brisbane.

(Henry in his adjustable boot. Photo: supplied)

For many, amputation is offered due to the complexity of the condition, and the cost of surgeries that are only available overseas. They are not performed in Australia.

Henry requires a SUPERhip procedure in Abu Dhabi in February next year. This is a complex hip reconstruction. Two years later, when Henry will be five, he will be heading to Florida, USA, for the first of three (3) lengthening procedures.

Once diagnosed, which took four months, Stephen and Hannah discovered Dr Dror Paley, a Canadian-born orthopedic surgeon who specialises in limb lengthening and deformity correction procedures.

"He's the one that's created and patented this surgery, super hip, which is essentially a really long, complicated hip reconstruction," Stephen explained.

"We are comparing a hip replacement, which is an hour and a half under anesthetic, compared to seven hours under anesthetic for this. We are comparing six steps for a hip replacement to 60 steps for this."

The procedure is being done in the UAE (United Arab Emirates) because only a few countries around the world will pay for their citizens to fly to the US for surgery with Dr. Paley.

"What these countries have done is that instead of sending their citizens there. They've just built their own facility for him to then fly in and fly back home. So he spends about a week there with all his team, anesthetists and other surgeons, and he'll do clinics and operate for about a week. So he's flying in and out of Abu Dhabi. He goes to Columbia, and he's about to open another one in China," Hannah said.

"We are confident he is the best guy for the job."

Hannah said that she and Stephen met a Gold Coast father whose daughter was the first Australian to have the lengthening operation. She is 18 years old now. This man has supported about twenty other families to make the trip to Abu Dhabi.

Stephen said that funding is not available for limb-saving treatment overseas; only life-saving, which means he and Hannah have had to start their own charity, the CFD Foundation, and begin fundraising.

The cost for the procedures that will allow Henry to be like his friends and participate in activities like they do, is $570,000 over three years.

"Our son is a resilient and extremely capable young boy who (with the help of his boot) runs, jumps and climbs," Stephen said.

"The main thing he struggles with is any kind of climbing with it because he's got such a small femur. Lifting doesn't make the biggest difference, he's still got this big length from his knee down. And so getting into slide, if he doesn't do it the right way, he can't fit his boot in."

Hannah added, "And also up things, like his climbing frame out there, because it's (Henry's boot) so chunky, a 10 and a half at the moment it is too big for the rungs. So, his boots are too big to even climb a ladder. Climbing up to go on a slide or something, he can't get his foot in and he'll want to take his boot off. But he's not in pain."

"Our hope is that the CFD Foundation will be able to continue its work beyond Henry to help other families impacted by a diagnosis of CFD.

$570,000 is an amount that would frighten and overwhelm most people, but Stephen and Hannah are not ordinary parents. They have grabbed the bull by the horns and have begun three years of a massive fundraising campaign.

Since June 2023, when the CFD Foundation was launched, Stephen and Hannah have raised almost $135,000. A monumental effort, but still a significant $435,000 short of their total.

The next fundraising event is a concert featuring well-known Australian performer Shannon Noll and his son Blake, plus popular local singer-songwriter Luke Vassella on Saturday, April 5 at the Lismore Workers Club between 6 and 10pm. Tickets are $80.

Henry's first surgery, the SUPERhip procedure, will cost about $220,000. This is step one in a multiple step process.

Until the surgery is performed in 2026, Henry and Hannah will travel to Brisbane every three months.

"They have to add a little bit more height to modify his boot because the leg length difference is always growing. Because there's a deformity in the growth plate, it doesn't just stay at two and a half centimeters when he was born. It's now 10 and a half centimeters, and it's always going towards the 23 centimeters. They add a centimetre every time we go up."

The CFD Charity Concert will be held on Saturday, April 5, at the Lismore Workers Club. Tickets can be booked through the CFD Foundation website.