Help a Brave Little Girl Access Life-Saving Treatments

I’m raising funds on behalf of an incredible mother and her beautiful daughter — two of the kindest, strongest souls I’ve ever known.

Lena is a young girl with the gentlest heart, and she has spent most of her childhood battling complex and rare health conditions. She has beaten Tuberculosis twice, and recently received a heartbreaking diagnosis: neuropsychiatric lupus (NPSLE), which, compounded by previous spinal TB, has caused severe nerve pain, spinal deformity, and respiratory challenges. Despite her young age, she has endured more hospital stays, treatments, and pain than many do in a lifetime.

Lena’s life has been a whirlwind of hospitals, emergency rooms, and medical battles since the moment she was born. She came into this world with a rare and severe complication from Listeriosis — a devastating infection that left her tiny body fighting for survival. From day one, her immune system was compromised, leaving her vulnerable to rare, debilitating complications that most people will thankfully never experience. While other kids were learning to ride bikes, Lena was hooked up to IVs. Instead of playgrounds, she’s known hospital wards.

Her mother has been in a constant, exhausting fight for her survival for the last 12 years.

It has been a long, difficult road

Many of the medications used to treat lupus are filtered through the kidneys. Because Lena has a history of kidney damage—including complications from tuberculosis in her spine and kidneys—her body can’t process these drugs normally. This puts her at high risk for serious side effects or even toxicity, which is why frequent and costly blood tests are required to closely monitor both her kidney function and drug levels.

Her daily life continues to be shaped by severe, often debilitating pain. Some days, the pain is so intense she struggles just to eat. She also suffers from crippling migraines—another manifestation of neuropsychiatric lupus (NPSLE)—but due to her medical history, many typical treatments are unsafe or unavailable.

In 2023, Lena suffered an ischemic stroke. No child should ever have to endure such a terrifying event. It left her unable to stand on or move her right foot for months, stripping away her independence and mobility. The months that followed were filled with painful, exhausting physiotherapy—every small step forward came with frustration, fatigue, and fear of setbacks.

But Lena, just like her fierce and fearless mother, refused to give up. She fights with every ounce of strength in her tiny body — even when doctors have no clear answers.

Her Treatment

Her condition is so rare and complex that there is no one-size-fits-all treatment. Instead, she requires a full team of specialists, constant medical interventions, and round-the-clock monitoring just to keep her stable. It’s a relentless battle — physically, emotionally, and financially — and Lena faces it all with courage beyond her years. Yet she remains a kind and giving soul — the kind of child who, during the pandemic, wrote a book and donated the proceeds to charity to help other kids.

She’s about to turn 13 in a few weeks, and this will be her 6th birthday in isolation. She’s missed so many milestones — even spending two Christmases in the hospital, separated from her family.

What She Needs

There is no single treatment that can “fix” her condition. Managing it requires a coordinated team of international specialists and continuous, highly specialized care. But they’ve run into one heartbreaking obstacle after another: The care she needs exists — they just can’t access it without help.

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Medical Needs:

• Custom spinal brace (Rigo-Chêneau, made in Germany): $2,000+

• Neurological physiotherapy and spinal therapy: $1,500 - $2,000 (per month) Only partially covered by insurance

• Genetic testing (California lab): $1,800+

• Life-saving medication (imported monthly): $1,800 to $2,500 (per month), not covered by insurance

• Specialist consultations with Boston Children’s Hospital and U.S.-based doctors: $1,150 per online consult, per specialist

• International shipping of medical data and bloodwork: Needed regularly, as she cannot travel

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The treatment she needs requires a specialized team, including ongoing consults with a doctor at Boston Children’s Hospital. But due to her fragile immune system and the high risk of infection, she cannot travel to the U.S. Instead, her bloodwork and medical data must be shipped across continents for review and consultation — all at a significant cost. Her South African insurance does not cover these international medical services.

Despite this, her mother has never stopped fighting for her.

She has exhausted every local resource. She works long hours, seven days a week, juggling multiple jobs to keep her daughter’s care going. She pays for a premium insurance plan, but the shortfalls are immense — especially with South Africa’s weak exchange rate, which makes even modest U.S. medical costs feel impossible.

Despite everything she’s been through, this brave little girl still holds onto big dreams — though they’re heartbreakingly simple:

But Lena is more than her illness. She’s a bright, creative soul with a gift for storytelling and illustration. Even amidst hospital stays and exhausting treatments, she’s been writing and drawing — creating magical little worlds where kids like her can feel seen, safe, and strong. She dreams of being well enough to finish her books and share them with other children facing medical challenges — to help them feel less alone, just as she wishes someone had done for her.

Please, if you’re able, be part of their story. Help this brave girl get the treatment, education, and care she deserves. Help her feel a little less alone.

Every donation, no matter how small, will make a big difference . Thank you for taking the time to read Lena's story. Your support will mean the world to this family-whether it’s though a donation or simply sharing this page.