Urgent appeal: siblings seek R20 million for life-saving treatment
All funds go directly toward the children’s treatment and long-term care.
Image: Supplied
In a truly heart-wrenching story of resilience and desperate hope, a family is battling to save their two young children diagnosed with one of the planet's rarest immune disorders. Siblings Sadie Krause, aged 21 months, and her six-year-old brother, Jesse, from Benoni, are facing a critical prognosis after being identified with DOCK8 Immunodeficiency Syndrome.
With fewer than 300 confirmed cases globally, the siblings' plight underscores a pressing and immediate need for public support. Their only chance at a cure lies in a staggering R20 million - R30 million (per child) treatment available exclusively overseas.
A rare diagnosis, a dire reality
Sadie and Jesse’s cases are believed to be among the first formally identified instances of DOCK8 syndrome in South Africa, highlighting the profound lack of local knowledge and resources.
Their aunt, Dominique Nelson-Esch, articulated the family's struggle to comprehend a condition so rare it has dramatically altered their lives.
“When Sadie and Jesse were diagnosed with DOCK8 Immunodeficiency Syndrome, we discovered just how rare this disease truly is, and how little information exists, especially here in South Africa,” Nelson-Esch shared.
DOCK8 Deficiency stems from mutations in the DOCK8 gene, which is pivotal for healthy immune function. For children like Sadie and Jesse, the consequences are dire, including persistent skin and lung infections, chronic viral illnesses, severe eczema and allergies, and a frighteningly high risk of cancer. They are left remarkably vulnerable to everyday germs, necessitating a rigorous and often brutally isolating treatment regimen.
Even with so much happening around them, Jesse remains kind and watchful, and Sadie’s laughter still fills the room.
Image: Supplied
The daily battle
To manage their life-threatening conditions, the young siblings must endure an exhaustive, daily gauntlet of care:
Weekly immunoglobulin infusions.
Ongoing antiviral and antibiotic medication.
bleach baths to manage viral skin conditions.
Regular hospital visits and strict isolation during illness.
Home-schooling for added safety, meaning cancelled outings, birthdays, and gatherings.
Dr Ashley Jeevarathnum, a paediatric pulmonologist and clinical immunologist overseeing their care, delivered a stark warning about the future without curative intervention.
“Children with DOCK8 do not have a fully functioning immune system. They are highly vulnerable to severe infections, chronic viral skin disease, progressive lung damage, and certain cancers at a young age. Without definitive treatment, the condition is fatal,” explained Dr Jeevarathnum.
A light in the darkness
Despite the enormous physical and emotional challenges they face every day, the siblings' spirit remains unbroken. Jesse remains a source of kindness and watchfulness toward his little sister, while Sadie’s infectious laughter continues to echo within their home—a powerful testament to their unwavering will amidst this extreme adversity.
The family is now urgently appealing for donations and public support to fund the necessary treatment abroad, aiming to overcome the immense financial barrier posed by the high cost of specialised healthcare.
Their story serves as a poignant reminder of the profound strength found in family bonds and community support in times of crisis, as they race against time to secure a future for their brave young children.