Two-year-old Henry will need numerous surgeries to help correct a rare condition affecting his femur. Photos: Henry James Fund.
Life’s a little trickier for two-year-old Henry James Boothroyd than for most toddlers, though you couldn’t tell from his smile.
“He’s a gorgeous little thing. He sings all the time, he runs around. His father was a state hockey player, so he’s very active,” Kiama Downs’ Margaret Boothroyd, Henry’s grandma, says.
“He hasn’t a clue there’s anything wrong.”
When Henry was born, a midwife noticed the crease on his right knee was slightly higher than the left when he was on his stomach. At first, he was diagnosed with hip displacement and placed in a brace for three months, but there was no improvement.
A specialist eventually diagnosed Henry with Congenital Femoral Deficiency or CFD; a rare condition characterised by a shorter femur on either one or, in extremely rare cases, both sides of the body.
One or two out of every 100,000 children are affected by CFD. While this rarity is good news, it does mean specialists are hard to come by.
“There’s nobody in Australia who is really qualified in this field because there’s not enough demand,” Margaret says.
At birth, Henry’s right femur had a 2 cm discrepancy, which medical professionals projected would equate to a 23 cm discrepancy by the time he stopped growing.
To counter this means numerous surgeries throughout Henry’s life as he grows, and very few can take place Down Under.
The first, to take place when Henry turns three, is the SUPERhip procedure (Systematic Utilitarian Procedure for Extremity Reconstruction), which will be carried out by Dr Dror Paley, a world-leading expert on limb lengthening and reconstruction based in Florida, United States.
Little Henry’s family founded the CFD Foundation and established the Henry James Fund.
“Henry’s femur hasn’t fully formed due to a defect in the growth plate. This primarily affects his femoral neck and head. The SUPERhip remedies the bony deformity and lays the framework for future lengthening procedures,” Margaret says.
“It’s basically a long and complicated hip replacement. This will be done at the Paley Institute in Abu Dhabi, mainly due to it being cheaper than in the United States where Dr Paley is based.”
At age five, Henry can have the first of numerous leg-lengthening procedures.
“Dr Paley wants to do the first one, so it’ll probably take place in Florida in his main Institute. The family will have to go for four months, as it requires extensive rehabilitation twice a day during the lengthening process,” Margert says.
“He will probably require three leg-lengthening procedures, and we’re hoping two can be in Australia so that Medicare can help out.”
Still, even without factoring in wage loss, accommodation, flights and general living expenses, the two operations alone will come to $570,000. To help raise funds for Henry’s treatment, the family created the CFD Foundation and established the Henry James Fund.
“There’s a long road ahead,” Margaret says. “But we have high hopes for a happy and healthy life for Henry.”
To help Henry get one step closer to limb-saving surgeries, you can make a tax-deductible donation via the Henry James Fund.
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