FAQs — The Henry James Fund

Question 1

What is Congenital Femoral Deficiency?

Accepted Answer

Congenital Femoral Deficiency (CFD), also known as Proximal Femoral Focal Deficiency (PFFD), is a rare birth defect characterised by a short femur (thigh bone), associated with hip and knee deformity, deficiency, or instability. CFD occurs in about one in 200,000 births and the cause is unknown.

Question 2

What is the prognosis?

Accepted Answer

CFD is characterised by a progressive limb length discrepancy. The affected limb does not grow properly, so as Henry ages, the discrepancy between the two limbs will continue to increase. As the expected discrepancy at skeletal maturity increases, the number of lengthenings required to equalise length will increase. Henry's predicted limb-length difference at full maturity is 23cm.

Question 3

What treatment is available?

Accepted Answer

Most children with CFD are offered above-the-knee (Symes) amputation — this is not something Henry's family has ever considered. CFD is very rare and its surgical treatment relatively new, so few surgeons are experienced in treating it. Henry requires multiple surgeries, beginning with a SUPERhip procedure. In Australia, there are no surgeons with the experience to offer this. After reviewing Henry's scans, Dr. Dror Paley — the world's most experienced limb lengthening surgeon — confirmed Henry will require a SUPERhip procedure and three leg lengthenings. Prior to surgery, shoe lifts, orthoses (braces), and prostheses can be used to manage the limb length discrepancy. Henry currently wears an Articulated Ankle-Foot Orthosis (AFO) with a built-up component which enables him to walk.

Question 4

What is the SUPERhip Procedure?

Accepted Answer

Dr. Paley invented the SUPERhip procedure in 1997. It is designed to comprehensively reconstruct severe bone and soft tissue deformities of the hip. It is recommended the procedure be performed between the ages of two and three, and is done six to twelve months before the first lengthening. Henry is predicted to require three leg lengthening procedures in total.

Question 5

How does Limb Lengthening work?

Accepted Answer

When bone breaks, it naturally regenerates to fix the fracture. Lengthening works by separating the bone and distracting (pulling apart) the bone segments very slowly so that new bone continues to form in the gap. As the bone segments are slowly distracted, the bone regenerates — resulting in increased length. This process is carefully monitored by the surgical team throughout Henry's recovery.

Question 6

What is The Henry James Fund?

Accepted Answer

The Henry James Fund is a charitable fundraising initiative established to raise the funds needed for Henry's limb-reconstructive surgery overseas. All donations go directly toward covering the costs of surgery, travel, accommodation, and post-operative care.

Question 7

Is my donation tax-deductible?

Accepted Answer

Yes — donations to The Henry James Fund are tax-deductible. You will receive a receipt for your donation that can be used for tax purposes. Please consult your tax adviser for specific advice relating to your circumstances.

Question 8

How much money needs to be raised?

Accepted Answer

The total fundraising goal is $600,000 AUD. This covers the full cost of the surgical procedure, specialist consultations, travel and accommodation for Henry and his family, and post-operative rehabilitation. As of July 2026, the fund has reached 79% of its goal — $476,000 raised.

Question 9

Where does the money go?

Accepted Answer

Every dollar raised goes directly toward Henry's surgery and associated costs — including specialist fees, hospital costs, international travel, accommodation, and ongoing rehabilitation. The fund is managed transparently, and updates on progress are shared regularly.

Question 10

How can I donate?

Accepted Answer

You can donate by clicking the 'Give Today' button on our website. We accept online donations via secure payment. If you'd prefer to donate by another method, please reach out to us via the contact form and we'll be happy to assist.

Question 11

Can I make a recurring donation?

Accepted Answer

Yes! Recurring donations are a wonderful way to support Henry's journey over time. Please contact us via the form on our website and we can arrange a regular giving option that suits you.

Question 12

Can businesses or organisations donate or sponsor?

Accepted Answer

Absolutely. We welcome corporate donations and sponsorships of all sizes. Sponsors receive recognition on our website and at fundraising events. Please get in touch via the contact form to discuss sponsorship opportunities.

Question 13

Can I donate in someone's name or as a gift?

Accepted Answer

Yes — if you'd like to make a donation in honour of someone or as a gift, please note this in the message field when donating or contact us directly and we'll ensure it's acknowledged appropriately.

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