For Sadie and Jesse Krause

TWO BRAVE CHILDREN. ONE BIG JOURNEY.

Sadie (21 months) and Jesse (6 years) have been diagnosed with DOCK8 (Dedicator of Cytokinesis 8), a very rare and life-threatening primary immunodeficiency. Their diagnosis is believed to be among the first (possibly the first identified) in South Africa, though this remains unverified.

DOCK8 severely weakens the immune system, leaving the body unable to fight infections and viruses. The only curative treatment is a bone marrow transplant, a highly specialised procedure most commonly performed at leading centres in the United States, where the majority of documented DOCK8 transplants have taken place.

Without a bone-marrow (stem-cell) transplant, DOCK8 deficiency is ultimately life-limiting, and fatal. Long-term studies show that fewer than 60 % of untreated patients survive beyond their second decade, mainly due to severe infections, chronic lung disease, viral skin infections, and malignancies. The only curative treatment is a haematopoietic stem cell (bone marrow) transplant (HSCT), a highly specialised and complex procedure requiring centres with direct experience in treating DOCK8.

While both children share the same diagnosis, their treatment journeys are no longer identical. Jesse has been accepted into a specialised DOCK8 treatment programme in the United States, while Sadie’s transplant pathway is still being actively pursued with international transplant centres. The road ahead remains complex. Treatment is high-risk, outcomes vary, and costs can change depending on medical response and complications.

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We officially began fundraising on 1 October 2025. Together, step by step.

This is a story about two little fighters.

Lee-Ann and Clayton are extraordinary parents. Jesse looks at his dad like he’s a superhero, and Sadie’s infectious giggle fills their home with such joy. They are a family bound by unconditional love, ready to take on this journey together.

Like all parents, their dreams are beautifully simple: to see Jesse running across a soccer field with his big smile, and to watch Sadie make her first friends at school. To tuck them in at night knowing they’re safe, healthy, and free to dream their own dreams.

Life, however, had different plans. Jesse’s earliest years have been filled more and more with hospital visits and doctors searching for answers. His immune system was struggling, and no one knew why.

When little Sadie arrived, Lee-Ann and Clayton hoped her story would be different. But by just a few months old, she too faced the same challenges as her big brother.

Today, the family faces these obstacles with courage, determination, and hope. They know that with the right treatment, Jesse and Sadie can have the bright, joy-filled childhood.

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About DOCK8: Understanding the Journey Ahead

DOCK8 is a cruel thief. It systematically destroys the immune system’s ability to fight even the most basic infections.

After years of sleepless nights, countless doctors who couldn’t provide answers, and the crushing weight of watching their children suffer, the truth finally came: DOCK8 Immunodeficiency Syndrome.

Most people have never heard of DOCK8, and in South Africa, very few medical professionals have encountered it. It’s so devastatingly rare that fewer than 300 cases have been reported worldwide since the condition was first identified. ORP PMC

Sadie and Jesse’s diagnosis is believed to be among the first (possibly the first) identified in South Africa, though this remains unverified. What should be a simple cold can turn into pneumonia. A small cut can become a dangerous infection. Even everyday environments most children take for granted can pose serious risks.

Without a bone-marrow (stem-cell) transplant, DOCK8 deficiency is ultimately life-limiting, and fatal.
Long-term studies show that fewer than 60 % of untreated patients survive beyond their second decade, mainly due to severe infections, chronic lung disease, viral skin infections, and malignancies.

A hematopoietic stem-cell transplant (HSCT) is the only known curative treatment, with international studies showing ~80–85 % survival and restoration of immune function when performed in experienced centres.

These findings underscore the urgency of early, specialised intervention for children like Sadie and Jesse.

References:

Aydin SE et al. J Allergy Clin Immunol. 2015; 135:174–182. PubMed 25627830
Al-Herz W et al. Front Immunol. 2017; 8:190. PMC5354354
Aydin SE et al. Biol Blood Marrow Transplant. 2019; 25:2180–2190. ASTCT Journal PDF
Pillay BA et al. JCI Insight. 2019; 4(6): e127527. JCI Insight

This is Sadie and Jesse’s Reality

Living with DOCK8 means constant illnesses. Bleach baths, strict handwashing, food precautions, and isolation whenever someone nearby is sick. The children cannot attend school, and when they get sick, hospital stays stretch into weeks, with blood tests, IV lines, and medications.

And yet, Jesse remains gentle and loving, a big brother who instinctively protects his little sister. Sadie’s giggles still bubble up like sunshine, even on her hardest days. Their resilience is extraordinary. It reminds us that while DOCK8 has stolen a part of their childhood, it hasn’t taken away their spirit, their light, or the possibility of a healthier future.

The Transplant That Means Tomorrow.

A DOCK8 bone marrow transplant is an exceptionally complex and high-risk procedure. It involves rebuilding the immune system from scratch, but it’s also the only known curative treatment that can give Sadie and Jesse a chance at a healthy, full life. PMC

The Donor Pathway

Out of millions of registered donors worldwide, stem cell transplantation requires a compatible donor. While unrelated donor registries are often explored, in some cases a suitable match can be identified within the family. For Jesse, a compatible donor has been identified, allowing his transplant pathway to proceed. This approach remains medically complex and carries significant risk, requiring highly specialised preparation, immune conditioning, and post-transplant care.

Sadie’s donor and transplant pathway are still being actively evaluated with international transplant centres, and the safest option for her has not yet been finalised. Each child’s transplant journey is unique. Donor availability is only one factor, and does not reduce the medical risk, complexity, or need for ongoing care and support. ASTCT Journal

Unmatched Complexity

A DOCK8 transplant is not the same as a “standard” bone marrow transplant. It requires specialised medical teams who have experience treating DOCK8 deficiency and access to facilities equipped to manage severe immune-related risks.
Most documented DOCK8 transplants have taken place at leading centres in the United States, where research and clinical experience with this specific procedure are most advanced. JACI NIH ScienceDirect

When Every Day Counts

DOCK8 doesn’t wait. With every infection, Jesse and Sadie’s immune systems become more fragile. The sooner they receive their transplants, the stronger their chance of success. Time is the most precious resource. NLM

How Treatment Plans Are Taking Shape

When this campaign was first launched, we were preparing for the possibility that both Sadie and Jesse would require fully self-funded international stem cell transplants, which is why the initial overall funding estimate was set at approximately R40 million.

Since then, important developments have taken place. Jesse has been accepted into a specialised DOCK8 treatment programme in the United States, where his core transplant and treatment are being addressed within a formal clinical research framework. This has significantly impacted the transplant costs that need to be privately funded.

As a result, the fundraising goal has been revised to R20 million until we can confirm the current and future medical needs, particularly:

Sadie’s transplant and associated care, which remain unclear and are still being finalised
Ongoing medical treatment, post-transplant care, and immune support for both Jesse and Sadie
Unforeseen complications and costs not covered by medical aid or research programmes for Jesse and Sadie.

As with all complex medical journeys, costs may continue to evolve. We are committed to updating supporters transparently as treatment pathways develop and ensuring that all funds are used responsibly and strictly for medical care.