Help Us Build Her Accessible Future

Help Us Give Louella a Supported Future

Our 8-year-old daughter Louella is one of the rarest children in the world. Born with a progressive and medically unique limb difference—chemically, genetically, and physically—she remains the only known case of her kind, anywhere.

As her condition worsens, Louella is now fully dependent on a wheelchair. Her body is showing signs of nerve damage, structural bone failure, and pressure-related injuries. Surgery, prosthetics, and joint replacements have all been ruled out. Her bones are fragile. Her function is changing. Her needs are becoming urgent.

Why Our Current Home Isn’t Enough

We currently live in a property that cannot be modified to meet her growing care needs:

Our Dream

Our dream is simple: to adapt a home that supports Louella—not one that holds her back.

A home where:

What We’re Seeking Support For

We’re seeking your help to raise funds for:

Louella is bright, brave, kind, and full of fire. Her family and friends adore her. She’s going to set the world alight—we just need to give her the space and support to do it.

Every donation—large or small—brings us one step closer to giving Louella a home she can thrive in.

Why This Fundraiser Matters Beyond the Home Itself

Travel and Time Away from Family

Because of the rarity of Louella’s condition, we travel regularly to Westmead Children’s Hospital in Sydney. These trips involve:

️Housing Challenges

Finding a property in today’s market is hard enough.

Finding one that’s both available and accessible is even harder.

And when we do find something that meets Louella’s needs—and those of her siblings—it almost always comes at a much higher cost. That makes saving for a permanent, accessible home feel more and more out of reach.

NDIS Insecurity

Although Louella currently receives NDIS funding, the lack of a formal diagnosis means we’re often required to “re-prove” her eligibility. That puts us in a vulnerable position where support could be reduced or withdrawn, even as her condition continues to progress.

A stable home would give her the long-term foundation and consistency she needs—regardless of external decisions.

Louella’s Medical Condition: Explained Simply, But Accurately

Ultra-Rare Skeletal Dysplasia

Louella has a rare skeletal condition caused by a pathogenic mutation in the ALPL gene. This affects how her bones grow, develop, and mineralise, leading to severe skeletal changes.

It is believed to be a form of pseudohypophosphatasia—a rare subtype of hypophosphatasia (HPP). It's progressive, complex, and presents uniquely in her biochemistry and structure.

She is the first documented case of this exact combination of symptoms in the world.

Treatment and Risks

Surgical options are not viable due to poor healing potential and fragile structure

Joint replacements are not suitable for her age and condition

She was recently under experimental enzyme therapy (Strensiq) which cost $80,000/month under an access program, but was unsuccessful

What This Means for Louella’s Daily Life

We do everything we can to provide her care with dignity and consistency.

Thank You

Thank you for reading, donating, and sharing.

With love,

Brooke, Dave & family

⚖️ Disclaimer

This fundraiser is organised by Louella’s primary caregivers—her mother (Brooke) and stepfather (David)—and is intended solely to support her care, accessibility, and housing needs. Funds will be used at the discretion of her immediate household for the benefit of Louella’s wellbeing.

No other biological relatives share care or caregiving responsibilities nor are involved in this fundraiser. No third parties are entitled to access or manage these funds.