For Jesse and his parents Clayton and Lee-Ann, the road ahead is not a single procedure, but a long, carefully managed medical journey that will unfold over months. It is a journey shaped by uncertainty, vigilance, and courage, and one that requires extraordinary medical care alongside unwavering family support.

At leading centres in Germany and at the National Institutes of Health (NIH) in Washington, preparation for a DOCK8 stem cell transplant is treated as just as important as the transplant itself. What follows is a clear, human picture of what this road typically looks like and why support remains so essential throughout. 

Below is an overview of how preparation typically works at specialist transplant centres and within NIH clinical protocols.

 

1. Understanding Jesse’s starting point. Comprehensive disease mapping — beyond the diagnosis

Before a child is even scheduled for transplant, teams build a full picture of disease burden.

This includes:

• Genetic confirmation of the DOCK8 mutation
• Detailed immune profiling (T-cell, B-cell, NK-cell function)
• Viral load assessment (including chronic viral skin disease such as severe molluscum contagiosum)
• Lung imaging and pulmonary function testing
• Evaluation of prior infections and antibiotic resistance
• Nutritional status and growth
• Organ function (liver, kidneys, heart)

At centres such as NIH and Germany, this phase is deliberately slow and thorough. DOCK8 is not treated as a “standard transplant indication”. Every detail matters because pre-existing viral disease and organ damage strongly influence transplant risk and recovery.

Severe molluscum, like that affecting Jesse and Sadie, is not dismissed as a skin issue. It is recognised as a marker of profound immune dysfunction and ongoing viral burden, which must be factored into transplant timing and preparation.

 

2. Donor and transplant planning — complex by design

Once Jesse’s condition has been fully mapped, transplant planning moves forward. Centres do not treat donor selection as a binary “matched or not” question. Instead, they consider:

• Degree of HLA match
• Donor health and availability
• Urgency of transplant
• Viral burden and immune instability
• Centre experience with different donor types

Importantly, donor availability does not reduce transplant risk. Even when a suitable donor is identified, DOCK8 transplants remain complex, particularly when viral disease is active.

The donor choice directly influences:

• Conditioning intensity
• Graft-versus-host disease (GVHD) prevention strategy
• Post-transplant immune suppression
• Infection prophylaxis

At the NIH and major German centres, these decisions are made by multidisciplinary teams, often involving immunologists, transplant physicians, infectious disease specialists, dermatologists, and pulmonologists. Each step is weighed carefully, because small decisions can have long-term consequences.

 

3. Stabilisation and infection control before transplant

One of the most important phases, and one that supporters often never see, is pre-transplant stabilisation. In this phase, Jesse’s care focuses on:

• Reduce bacterial and fungal burden
• Control active viral disease as much as possible
• Treat secondary bacterial infections from chronic skin lesions
• Optimise skin integrity
• Improve nutritional reserves
• Reduce inflammation before conditioning begins

Children with severe molluscum often require ongoing skin care, antimicrobial support, and close monitoring right up until transplant admission. For parents, it means living in a state of permanent readiness, knowing that plans can change quickly depending on how a child responds. This phase can take weeks or months, depending on how the child responds. This is not delay, it is risk reduction.

 

4. Conditioning: tailored, not generic

When Jesse is admitted for transplant, the pace intensifies. Conditioning treatment is given to prepare his body to accept donor stem cells. In DOCK8, this is tailored carefully: strong enough to allow successful engraftment, but balanced to avoid unnecessary toxicity. The transplant itself (the infusion of stem cells) is often described as anticlimactic. It looks simple. But the days and weeks around it are anything but.

Conditioning refers to the chemotherapy and immune-modulating treatment given before transplant to allow donor stem cells to engraft. In DOCK8, centres aim for enough conditioning to ensure durable engraftment, while carefully avoiding unnecessary toxicity. This balance is critical in non-malignant diseases.

Factors influencing conditioning choice include:

• Child’s age and size
• Viral burden and skin disease severity
• Lung health
• Donor type
• Prior immune suppression
• Centre-specific experience and published outcomes

There is no single “DOCK8 conditioning regimen.” Instead, protocols are individualised, drawing on EBMT/ESID guidance and centre expertise. This is also where timelines and costs can change, not because of miscalculation, but because every immune system rebuilds differently.

 

5. Hospital admission and transplant phase

Once admitted, the transplant process becomes highly structured. This phase typically includes:

• Protective isolation
• Central venous access
• Conditioning chemotherapy
• Stem cell infusion
• Intensive monitoring for infection
• Blood product support
• Management of fevers, mucositis, skin reactions, and gut symptoms

The actual stem cell infusion may appear simple, but the surrounding weeks are medically intense. Children with DOCK8 are monitored closely for:

• Early infections
• GVHD
• Delayed immune recovery
• Reactivation of viral disease

After transplant, recovery is gradual. Jesse’s immune system will need time to rebuild, learn, and strengthen.

 

6. Immune reconstitution and early recovery

Post-transplant, the immune system does not “switch on” overnight. German and NIH protocols involve:

• Gradual reduction of immune suppression
• Ongoing antiviral, antifungal, and antibacterial prophylaxis
• Frequent immune function testing
• Monitoring for GVHD
• Careful management of skin and viral disease as the new immune system develops
• Clearance of chronic viral infections — including molluscum — is often a key sign of immune recovery, but it can take time.

Families are supported through prolonged periods of isolation, frequent clinic visits, and ongoing uncertainty during this phase.

 

7. Long-term follow-up: transplant is not the finish line

Even once Jesse leaves the hospital, the journey continues. Both German centres and NIH emphasise that HSCT is the beginning of a new phase, not the end of care.

Long-term follow-up includes:

• Immune monitoring
• Revaccination schedules
• Lung surveillance
• Skin and allergy management
• Growth and development support
• Psychosocial care for the child and family

This long arc of recovery is why transplant planning always includes post-transplant resources, not just the hospital stay.

A grounded perspective

Preparation for a DOCK8 transplant is not about bureaucracy or caution for its own sake. It is about giving a child the strongest possible foundation before undergoing one of the most demanding procedures in medicine. German centres and the NIH share this philosophy: careful preparation improves survival, reduces complications, and protects the future that transplant is meant to give. This is why planning takes time and why support matters at every stage of the journey.  

For Clayton and Lee-Ann, this journey means months away from home, constant medical decision-making, and the emotional weight of watching a child endure something no child should have to face, as well as the planning of Sadie’s treatment which will follow. Support during this time is not just financial. It is practical, emotional, and spiritual. It is knowing that others are holding the family in their thoughts and prayers while they focus entirely on Jesse’s care.

This road is demanding, unpredictable, and deeply personal. But it is also a road walked with hope grounded in expert medicine, careful preparation, and the belief that Jesse deserves a future defined by health, not illness.

As this next chapter begins, the family needs continued support more than ever.

References & Further Reading 

• EBMT / ESID Guidelines for HSCT in Inborn Errors of Immunity (IEI)
  European consensus used by leading German transplant centres
  https://www.ebmt.org/sites/default/files/2021-07/EBMT%20ESID%20IEWP%20Guidelines%20for%20HSCT%20for%20inborn%20errors%20of%20immunity.pdf

• EBMT Handbook – Inborn Errors of Immunity (HSCT principles & preparation)
  https://www.ncbi.nlm.nih.gov/books/NBK608258/

• NIH Clinical Experience with DOCK8 Deficiency and HSCT (PubMed)
  Includes protocol-driven, prospective transplant outcomes
  https://pubmed.ncbi.nlm.nih.gov/39233015/

• Hematopoietic Cell Transplantation for DOCK8 Deficiency – Review Article
  Covers donor strategies, conditioning, and outcomes
  https://pubmed.ncbi.nlm.nih.gov/33279973/

• Conditioning Regimens in Primary Immunodeficiency (Frontiers in Immunology)
  Reflects approaches used in Germany and other European centres
  https://www.frontiersin.org/articles/10.3389/fimmu.2023.1162605/full

• Haploidentical and Alternative Donor HSCT in IEI
  Relevant to modern donor strategies at NIH and German centres
  https://link.springer.com/article/10.1007/s12098-024-05070-9

• NIH National Cancer Institute – Pediatric HSCT Overview
  Framework used in NIH clinical transplant programmes
  https://www.cancer.gov/about-cancer/treatment/types/stem-cell-transplant

• Post-Transplant Immune Reconstitution & Long-Term Follow-Up (EBMT)
  https://www.ebmt.org/education/ebmt-handbook

As Jesse and his parents travel to the United States from 9 January, we invite you to follow our Facebook page, where Jesse and Sadie’s parents will be sharing updates directly while they are abroad. This will be the best place to stay up to date with Jesse’s treatment progress and day-to-day developments during this important phase of care.

We are deeply grateful for the love, prayers, and support that have carried our family to this point. As Clayton and Lee-Ann focus fully on Jesse’s treatment and recovery, your continued encouragement, prayers, and kindness mean more than we can express. Knowing that so many people are walking alongside us brings great comfort and strength during this time.

Thank you for being part of Jesse and Sadie’s journey and for holding our family in your hearts and prayers as this next chapter begins.

We want to share an important and transparent update on Sadie and Jesse’s medical journey as we enter the next phase. While Sadie and Jesse share the same diagnosis, their treatment pathways are now different.

Jesse has been accepted into a specialised DOCK8 treatment programme with the National Institute of Health (NIH) in the United States following extensive medical review. As part of this programme, Jesse’s core transplant and treatment are being addressed within a clinical research framework. Jesse will travel to Washington DC with his parents in January 2026 to begin this phase of treatment and recovery, which is expected to take several months, subject to medical response and progress. There remain additional medical considerations outside of the NIH programme, including longer-term follow-up care, post-treatment needs once Jesse returns home, and certain procedures that are not covered within the research protocol. These aspects are still being evaluated in consultation with Jesse’s medical team.

Sadie is currently too young to qualify for the same programme. Her treatment pathway is still being actively pursued with international transplant centres, while she remains in South Africa under close medical supervision and maintenance treatment. Based on current medical input, Sadie’s transplant and associated care represent the largest remaining funding need, with initial estimates of approximately R8–R20 million, depending on clinical factors and complications.

When this campaign began, we were preparing for the possibility that both children would require fully self-funded international transplants, which is why earlier estimates were higher. As Jesse’s pathway has become clearer, the fundraising goal has been adjusted to reflect the remaining and anticipated medical needs, particularly for Sadie, as well as ongoing and unforeseen care for both children.

Stem cell transplantation is complex and high-risk, and costs and timelines can change. We remain committed to sharing updates responsibly as plans evolve. As Jesse and his parents travel to the US from 9 January, updates will be shared directly by the parents via the family’s Facebook page. From the bottom of our hearts, thank you to everyone who has supported, donated, prayed, and walked this journey with us.

If you’ve been following DOCK8 stories online, you’ll notice something interesting: families often speak in the language of “breakthroughs,” “new protocols,” and “new options.” And while it’s true that outcomes are improving, it’s equally important to stay grounded in what has not changed. The most important constant remains this: for DOCK8 deficiency, allogeneic hematopoietic stem cell transplantation (HSCT/HCT) is still the only known curative treatment. This is the current medical reality reflected in major clinical publications and international guidelines.

1) Better evidence, not just “hope”

For years, DOCK8 transplant evidence largely came from retrospective cohorts and single-centre experiences. Those matter, but the field is increasingly supported by stronger prospective data. A major recent milestone is the publication of results from a prospective clinical trial of hematopoietic cell transplantation for DOCK8 deficiency. Prospective trials are powerful because they track outcomes in a structured way, using predefined protocols and measurements, not just “what happened to patients we treated.” For donor communities and families, that matters because it increases confidence that:

• approaches are becoming more standardized,
• survival and immune reconstitution data are more reliable,
• complications are being anticipated and managed more consistently.

2) More donor options — including “half-matched” strategies

A huge practical barrier for many families is donor availability. Historically, the ideal was a fully matched donor (often matched sibling or matched unrelated donor). But that’s not always possible fast enough, especially in rare diseases. In recent years, transplant centres have increasingly refined haploidentical (“half-matched”) donor transplants, often using strategies like post-transplant cyclophosphamide (PTCy) to reduce graft-versus-host disease (GVHD) risk. This has expanded access to transplant for patients who might otherwise wait too long for a perfect match. The literature on haploidentical approaches in DOCK8 is now part of the broader DOCK8/IEI transplant conversation. The key point for supporters: a donor “being found” does not make the journey easy. It can make the pathway possible, but HSCT remains complex, high-risk, and highly individualised.

3) Refining conditioning: aiming for “enough” without unnecessary toxicity

Conditioning refers to the chemotherapy (and sometimes immune antibodies) given before transplant to make space for donor stem cells and reduce rejection risk. In non-malignant diseases like DOCK8, the field has been moving toward conditioning regimens designed to balance:

• engraftment success,
• immune reconstitution,
• and reduced long-term toxicity.

There is a large body of work on conditioning strategies for primary immunodeficiencies, including UK and European experience with agents like treosulfan/fludarabine in children with non-malignant disorders. This isn’t “one-size-fits-all,” but it represents a broader evolution toward safer, more tailored approaches.  

4) Using targeted therapies as “bridges” to transplant

Another development you’ll see more often now is the idea of bridging therapy: improving a child’s inflammatory burden, eczema, or infection control before HSCT so they enter transplant in the strongest possible condition. A relevant example in recent literature includes reports describing individualised pre-treatment strategies (including immune-modulating medications) before HSCT in DOCK8 patients, aimed at stabilising disease and improving readiness. This doesn’t replace transplant; it supports better transplant conditions.  

5) A clearer view of long-term outcomes and “what recovery really means”

Modern DOCK8 conversations are also more honest about the reality that transplant recovery is not instant. Immune rebuilding takes time. Viral clearance can be gradual. Some allergic features may persist for a period. But overall, the goal is profound: a functioning immune system and a life no longer defined by relentless infection risk. International guidance documents for inborn errors of immunity now emphasize structured long-term follow-up, infection prophylaxis, and revaccination planning post-HSCT — all part of what “successful treatment” truly entails.

The grounded conclusion

So yes: there are real developments: better evidence, improved donor strategies, refined conditioning, and smarter “bridge-to-transplant” care. But the core truth remains unchanged: DOCK8 is cured by rebuilding the immune system, and HSCT is still the route to that cure. And that’s why fundraising, planning, and careful preparation remain essential because even when the science improves, the journey is still serious, demanding, and deeply human.

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References & Further Reading

• EBMT/ESID HSCT guidelines for inborn errors of immunity — https://bit.ly/EBMT-ESID-IEWP

• Prospective DOCK8 transplant outcomes — https://pubmed.ncbi.nlm.nih.gov/39233015/

• Donor options including haploidentical transplant — https://link.springer.com/article/10.1007/s12098-024-05070-9

• Conditioning strategies in immunodeficiency transplants — https://www.frontiersin.org/journals/immunology/articles/10.3389/fimmu.2023.1162605/full

• Pre-transplant supportive strategies — https://www.frontiersin.org/journals/immunology/articles/10.3389/fimmu.2024.1507494/full

• EBMT IEI overview and transplant rationale — https://www.ncbi.nlm.nih.gov/books/NBK608258/