<div><strong>Help Us Give Louella a Supported Future</strong>
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<div>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.
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<div>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.
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<div><strong>Why Our Current Home Isn’t Enough</strong>
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<div>We currently live in a property that cannot be modified to meet her growing care needs:
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<li>She can’t use her wheelchair inside
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<li>Lifting support equipment will soon be necessary to continue care safely
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<li>She uses a child’s scooter indoors as a workaround due to space limitations
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<div><strong>Our Dream</strong>
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<div>Our dream is simple: to adapt a home that supports Louella—not one that holds her back.
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<div>A home where:
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<li>Her wheelchair fits through the doors
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<li>Her medical equipment works safely
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<li>Her independence can grow
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<li>And we can continue to care for her with dignity
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</ul>
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<div><strong>What We’re Seeking Support For</strong>
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<div>We’re seeking your help to raise funds for:
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<ul>
<li>Entry into a home we can modify to suit her
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<li>Basic accessibility modifications (bathroom, doorways, ramps)
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<li>Lifting and support equipment
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</ul>
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<div>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.
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<div>Every donation—large or small—brings us one step closer to giving Louella a home she can thrive in.
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<div><strong> Why This Fundraiser Matters Beyond the Home Itself</strong>
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<div><strong><em>Travel and Time Away from Family</em></strong>
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<div>Because of the rarity of Louella’s condition, we travel regularly to Westmead Children’s Hospital in Sydney. These trips involve:
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<li>Significant time away from home
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<li>Time off work
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<li>Long stretches apart from our other children
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<li>Added costs for accommodation, transport, and missed income
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</ul>
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<div>️<strong><em>Housing Challenges</em></strong>
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<div>Finding a property in today’s market is hard enough.
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<div>Finding one that’s both available and accessible is even harder.
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<div>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.
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<div><strong><em>NDIS Insecurity</em></strong>
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<div>Although Louella currently receives NDIS funding, the lack of a formal diagnosis means we’re often required to “<em>re-prove</em>” her eligibility. That puts us in a vulnerable position where support could be reduced or withdrawn, even as her condition continues to progress.
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<div>A stable home would give her the long-term foundation and consistency she needs—regardless of external decisions.
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<div><strong>Louella’s Medical Condition: Explained Simply, But Accurately</strong>
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<div><strong><em>Ultra-Rare Skeletal Dysplasia</em></strong>
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<div>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.
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<div>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.
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<div>She is the first documented case of this exact combination of symptoms in the world.
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<ul>
<li>Progressive Bone Deformities
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<li>Tibial bowing (angling of the shin bones)
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<li>Patellar dislocation (kneecaps no longer track correctly)
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<li>Bone shortening and curvature in both arms and legs
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<li>Upper limb deterioration, now visible in deep skin folds
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<li>Loss of joint alignment and functional movement
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<li>Severe Mobility Limitations
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<li>Cannot walk or move between surfaces without full assistance
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<li>Cannot use her power wheelchair inside due to layout constraints
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<li>Uses a child’s scooter indoors as an adaptive workaround
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<div><strong><em>Treatment and Risks</em></strong>
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<div>Surgical options are not viable due to poor healing potential and fragile structure
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<div>Joint replacements are not suitable for her age and condition
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<div>She was recently under experimental enzyme therapy (Strensiq) which cost $80,000/month under an access program, but was unsuccessful
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<div><strong> What This Means for Louella’s Daily Life</strong>
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<li>Requires full assistance with personal care. Cannot toilet, dress, or bathe independently.
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<li>Her bone structure causes deep skin folds in the groin, arms, and legs—requiring daily care to prevent skin breakdown and infection.
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<li>Struggles with fine motor skills—holding objects like icy poles or a tablet
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<li>Needs lifting equipment for safe transfers as she grows
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<li>Pain and nerve involvement results in discomfort most nights. Likely due to nerve compression from bone changes
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<li>Relies on a combination of medical, therapeutic, and equipment-based support
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</ul>
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<div>We do everything we can to provide her care with dignity and consistency.
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<div><strong> Thank You</strong>
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<div>Thank you for reading, donating, and sharing.
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<div>With love,
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<div>Brooke, Dave &amp; family
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<div>⚖️<strong> Disclaimer</strong>
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<div><em>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.</em>
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<div><em>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.</em>
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Tony Shepherd

Stephanie Hardacre

Danny Mortensen

Jillene Donnelly

Dave Wilkinson

Belle Murray Mcdonald

Debrah Ritchie

Anonymous

Wendy O'Connor

Kobie Robertshaw

Tony Shep

Genelle Scotts

Stana Maslin

Zahn Picken

Renae Taylor

Help Us Build Her Accessible Future

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Help Us Build Her Accessible Future

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