http://sadiejessedock8.org/, https://www.backabuddy.co.za/campaign/sadie-jesse-krauses-stem-cell-transplants

The Sadie and Jesse Dock8 Foundation, Benoni (2026)

20/05/2026

Update on Jesse here in Washington at the NIH.

Today marks a massive milestone in his journey — Day 100 post-transplant. This is the end of the transplant protocol, and today Jesse underwent his 100-day blood tests to check his chimerism levels, medication levels, immune function, and overall health to determine whether he is finally eligible to come home.

The good news is… Jesse has ticked all the boxes so far!

Over the past few weeks, he has been battling some skin GVHD (Graft vs Host Disease), which has happened during the tapering of certain medications. As the doctors slowly reduce some of the immune suppression, the donor cells and Jesse’s body are still learning to recognize each other. With LeeAnn being his donor, her healthy immune cells are now living inside Jesse’s body. Those cells are naturally trained to fight anything foreign, while Jesse’s body also reacts to those new cells. The immune suppressants are there to calm that process long enough for the body to eventually understand that it is no longer fighting an enemy.
Despite this challenge, Jesse is doing well.

The most incredible part of all of this is that Jesse no longer has DOCK8 deficiency.

Jesse has been able to stop many of the chronic medications he depended on before transplant. He no longer requires IVIG treatments, and he has stopped several of the preventative antibiotics, antifungals, and antiparasitic medications he previously needed. His immune system is still currently suppressed to prevent GVHD, so we still need to be extremely careful to keep him healthy and away from infections, flu, and viruses while his body continues to recover.

Today he had 16 vials of blood drawn, and every possible marker will be thoroughly checked over the coming days. While we are still waiting on some of those detailed results, all of the major markers have come back positive. He has hit every important milestone.

Every single day further away from transplant lowers the risk of complications, and with each passing day, we breathe a little easier. We still have to remain extremely disciplined with medication schedules and follow every precaution carefully, but for the first time in a long time, it truly feels like we are moving forward.

Once we return home, Jesse will continue follow-up care with Dr Ashley and transplant specialists, who will work closely together with the NIH team in Washington to monitor all of his blood work and recovery progress. In August, we will need to return to the NIH for a 6-month follow-up, where they will do a full-body assessment — follow ups will continue at the NIH every year for 5 years.

We have now been in the United States for five months. Without question, this has been the hardest season our family has ever walked through.

Watching Jesse go through treatment, chemotherapy, isolation, procedures, fear, and pain — while not fully understanding why all of this was happening to him — has been difficult. Being separated from Sadie for five months has been another kind of pain entirely.
Watching her grow up through video calls has been devastating at times. She has changed so much while we’ve been away. She’s gone from nappies to no nappies, she’s talking beautifully now, and every time we see her, she looks a little older. It feels like we’ve missed so many moments that parents never get back.At times it honestly felt like the world had stopped for us here in Washington, while life everywhere else carried on as normal.

The emotional toll of this journey is something very difficult to explain. The anxiety, the uncertainty, the trauma, the constant highs and lows — it has all been far bigger than we ever imagined. There were moments where it felt endless. Moments where getting through one single day was enough. But throughout all of it, we kept reminding ourselves: one day at a time.
Because when it comes to your children, nothing else matters.
You put your life on hold. Your work, your business, your plans, your comfort — everything becomes secondary to your child.

We are beyond grateful for every prayer, every donation, every message, every share, and every person who stood with us through this process.

A MASSIVE thank you to Kevin and Liana for all the support! It has been the hi-light of Jesse’s stay here, the count down to when his Aunty and uncle are coming to visit starts the day after they leave!

We are also incredibly grateful to the NIH and the unbelievable team of doctors, nurses, and specialists here. The level of professionalism, care, and detail throughout this entire process has been extraordinary. From endless screenings, swabs, dental checks, scans, bloodwork, and precautionary measures — every single step was handled with care and precision to give Jesse the best possible outcome.

More than anything, we are just excited to come home.

For months now, Jesse has asked us almost every single day, “When are we going home?”
After transplant, we told him he needed to get through 100 days, and every milestone became another countdown, another small celebration, another step closer. Now, after five long months, home finally feels close enough to touch.

Thank you again for all the love and support!

24/04/2026

Hi everyone,

It’s been a little while since our last update, and we wanted to share where things are at on Jesse’s journey.

Jesse is now on day 73 post-transplant, and we’re so grateful to say that he is doing really well. The past few weeks haven’t been without their challenges, though. When we moved into outpatient care, Jesse had a PICC line in his arm. It limited his movement quite a bit, and even simple things like showering became a daily struggle trying to keep it dry.

After about two weeks, Jesse made a decision that honestly stopped us in our tracks. He asked for the PICC line to be removed—knowing full well that it meant regular needle sticks for blood draws, three times a week. And he chose it anyway.

Jesse sits there and bravely puts his arm out for those needle pokes without hesitation. For a young boy to make that choice… it says more than we ever could about what he’s endured, the strength he carries, and the road he’s walked to get here. It’s both heartbreaking and incredibly inspiring at the same time.

Along the way, Jesse has developed skin GVHD, which the doctors are actively managing with the right medications. This is part of why the 100-day post-transplant period is so important—monitoring, adjusting, and making sure everything stays on track. He’s still going in for blood tests three times a week, and they’re keeping a very close eye on everything.
Jesse still has bone or growing pains from the medication he is currently on to suppress his immune system. His feet particularly are very sore and he explains it as if it is cramping and burning inside his feet, but that should subside when he tapers off those meds in about 4months time.

Despite all of this, Jesse keeps pushing forward. He’s seeing an occupational therapist twice a week and is also attending the NIH school daily, continuing with his Grade 1 work. We’re incredibly proud of how well he’s doing—he’s showing up, learning, and progressing in the middle of all of this.

Right now, things are moving in the right direction. If everything continues as it is, we’re hoping to head home around May 24th, which will mark his 100 days. (Still four weeks till we can come home, been in the states for 4months already) Of course, that all depends on how things continue—especially with GVHD—but we are hopeful. We would need to continue with follows up appointments with Prof. Reynders who is the head of the Paediatric Oncology Unit at Steve Biko Academic Hospital with specific interest in paediatric bone marrow transplants, in South Africa, in calibration with the NIH transplant team when we are home.

Back home, Sadie is doing really well too. She’s staying on all her precautionary medication, attending her monthly check-ups, and continuing her weekly IVIG treatments. We are beyond grateful to her grandparents, Henry and Dorothy, who have stepped in and are doing an absolutely incredible job taking care of her. We couldn’t do this without them.

To everyone who has supported us, prayed for us, and walked this journey alongside us—thank you. Truly. Your prayers, your messages, your kindness… we feel it, and we believe it’s making a difference.

We’re not at the finish line yet, but we are moving forward—one step, one day, one victory at a time—toward what we believe will be a long, healthy future for Jesse.

With sincere gratitude,
The Krause Family

18/03/2026

Hi everyone,

I wanted to share a meaningful update on Jesse’s progress since our last post.

We’ve reached a really big milestone — Jesse has officially been discharged from inpatient care and is now an outpatient. We’ve moved across to the Children’s Inn, a special place that supports families going through exactly what we are. This step alone says so much about how far he’s come.

Jesse’s journey over the past weeks has been nothing short of incredible. His blood counts, which dropped all the way down to zero after transplant (as expected), are now steadily rising. His new bone marrow — from his donor — is doing what it’s meant to do, and it’s starting to rebuild his immune system. One of the most encouraging signs is that his chimerism levels are at 100%, meaning his new immune system is fully donor-derived. This is exactly what the doctors were hoping to see.

He did experience some mild upper gastrointestinal GVHD, but thankfully it was caught early and has responded very well to treatment. He’s currently being tapered off the steroids and several of the medications that were part of the initial transplant protocol, which is another positive step forward.

Clinically, Jesse is doing so much better. He’s eating like an absolute machine, his stomach has settled completely, no more cramps, no nausea, and everything is functioning as it should. His strength is coming back, his energy is improving daily, and most importantly — he’s becoming himself again.

We’ll now be going into the hospital about three times a week for ongoing monitoring. Jesse still has a PICC line in place, which allows the team to take blood easily and administer anything he might need without repeated needle sticks. At this stage, his bloodwork looks good and he hasn’t needed any transfusions, but the line is there as a precaution.

Over the next couple of months, while we stay at the Children’s Inn, the team will continue to monitor him very closely. This includes watching for any signs of GVHD, as well as keeping a careful eye on infections — bacterial, viral, and fungal — while his new immune system continues to strengthen and mature.

This phase is all about steady recovery, careful monitoring, and allowing his body the time it needs to fully rebuild.

We are incredibly grateful to have reached this point. It’s a big step forward, and one we don’t take lightly.

The NIH is truly the best facility in the world that we are so extremely fortunate and blessed to allow Jesse the best medical care through this journey!

Jesse is doing really well — stronger, healthier, and moving in the right direction every single day. He’s not completely out of the woods yet, but he is definitely coming through them… and everything is looking positive from here.

Thank you to everyone who continues to support, pray, and stand with us. It truly means the world.

– Clayton and Lee-Ann

13/03/2026

Hi everyone,

I’d like to share another update on Jesse following our last post. (Day+31)

After the previous update, Jesse was scheduled to have a scope done on his stomach so the doctors could better understand why he was experiencing such severe cramping and ongoing nausea. At that stage, he was already on a full range of anti-nausea medications, but unfortunately the symptoms were not settling.

Following the scope, Jesse was immediately sent for a sonogram. After reviewing all the results together, the doctors confirmed that Jesse had developed acute Grade 1 GVHD (Graft-versus-Host Disease) in the upper gastrointestinal tract.

GVHD happens when the new donor immune cells begin reacting against the body they have entered. In Jesse’s case, he now has his mom’s donor cells working inside his body. The immune cells are essentially trying to work out what belongs and what doesn’t, and during that process they can sometimes overreact and cause inflammation. The treatment for this is medication that calms down the immune response so the cells can learn to coexist and tolerate each other over time.

The doctors started Jesse on a steroid treatment to reduce the inflammation and settle the immune reaction—and thankfully it worked incredibly well. His body responded almost immediately. The nausea improved, his appetite returned, the stomach cramps and diarrhea eased, and he began regaining strength. With the inflammation settling down, his blood counts also started improving quite significantly, and he is currently sitting at some very encouraging levels.

Before starting the steroids, the team also performed a chimerism test. This test measures how much of the blood and immune system is made up of donor cells versus Jesse’s original cells. We were incredibly grateful to learn that Jesse’s results came back showing 100% donor cells, which is a fantastic outcome and exactly what the doctors were hoping to see. They will continue monitoring this over the coming days and weeks.

At the moment, Jesse’s blood pressure has been running a bit high, which the doctors believe is likely related to some of the medications he is currently taking. They are monitoring this closely.

Since the last update, Jesse has also had his central line removed and replaced with a PICC line in his arm. This allows the team to draw blood and administer medications without needing to poke him with needles every day, which is a big relief for him. His blood is tested daily to monitor his counts and medication levels.

As part of their routine monitoring, the doctors have also been running regular stool, urine, and nasal swab tests every few days. These picked up two parasites and a virus, which Jesse is now receiving medication for. This can happen after transplant when the immune system is extremely suppressed—organisms that normally stay quiet in the body can take advantage of the weakened immune defenses. Thankfully everything has been detected early and is being treated.

The level of care Jesse has received here has honestly been incredible. The doctors and staff have been unbelievably thorough and careful with every detail, and it has been a privilege to work with such an amazing team here at the NIH.

If everything continues to go well, we are hoping that Jesse will soon be discharged from the inpatient unit and move to outpatient care. This means we will stay nearby instead of in the hospital itself, but we will still return to the hospital every day for monitoring and tests. Being able to stay in a quiet room without all the machines and alarms will be a really nice step forward for Jesse.

Right now the focus is on continuing to build Jesse’s strength, allowing his new immune system and blood cells to mature, and gradually reducing the number of medications he needs as his body stabilizes. The doctors will keep adjusting things day by day based on his blood results.

We still need to remain here in the United States for the full 100 days after transplant. Jesse is currently on Day +31, so we still have a little over two months to go. It’s a long road, but we are receiving the best care possible and we want to make sure every single box is checked to give Jesse the strongest future possible.

Overall, things are moving in the right direction and Jesse is continuing to make progress.

We just want to say a heartfelt thank you to everyone who has supported us, prayed for Jesse, and sent messages of encouragement. This journey has been one of the hardest experiences of our lives. At times it has truly felt like we’ve walked through hell. But we know the end goal is worth every step, and we are incredibly grateful for the love and support surrounding Jesse.

Thank you all for walking this road with us.🙏

05/03/2026

Hi everyone,

I just wanted to give a quick update on Jesse.

Today is Day +21 after his transplant. The good news is that Jesse officially engrafted on Day +14, which means the donor cells have started producing new blood cells. His counts did come up nicely after that, which is an important milestone.

Along the way we’ve had a few bumps. Jesse developed a very heavy nosebleed that lasted close to two hours and required additional platelets to get it under control. Thankfully the team managed it quickly.

At the moment his biggest challenge has been severe nausea and stomach cramps, which have made it difficult for him to eat. His appetite is very limited right now, so he is still receiving liquid nutrition through TPN around the clock to keep his strength up. His energy levels are still quite low, so he’s mostly resting in his room.

The doctors are monitoring him closely and we see the medical team every day. Tomorrow Jesse will have a scope (endoscopy) so the doctors can look inside his stomach and try to determine what might be causing the nausea and cramping.

Jesse is currently on quite a few medications, including:• Anti-nausea medication• Medication for stomach cramps• Immunosuppressants to prevent GVHD (these will continue until about Day +30)• Antiviral and antifungal medications for infection protection• Nutritional support (TPN)

Because his platelet count is still low, he also received a platelet infusion today to make the scope safer. If platelets are too low, even small irritation during the procedure could cause bleeding, so this is just a precaution.

Overall, his progress is still in line with what the doctors expect at this stage. He has come through the period where his blood counts dropped to near zero after the transplant, and now we’re waiting for his counts and immune system to continue strengthening.

Right now the main focus is simply getting the nausea and stomach cramps under control, and hopefully tomorrow’s scope will give the doctors more answers.

Thank you all so much for the prayers, messages, and support. It truly means a lot to us and to Jesse. We’ll keep everyone updated as we learn more.

With gratitude,
Lee-Ann, Clayton and Jesse

16/02/2026

Hi everyone,

We wanted to share an update on Jesse as he reaches Day +6 after his bone marrow transplant for DOCK8 deficiency.

The transplant itself went very smoothly, and we’re so grateful that he had no immediate side effects from the infusion. A few days later, he started additional chemotherapy medication designed to help prevent graft-versus-host disease (GVHD). He has since continued on immune-suppressing medication to further reduce the risk of GVHD, along with a growth factor medication to help stimulate his white blood cells to grow and multiply.

Right now, Jesse is in what they call the “transitional phase.” His blood counts are steadily dropping, which is expected at this stage. They haven’t reached zero yet, but the team anticipates that around Day +8 his counts will be at their lowest. This is considered the most vulnerable period of the transplant process because his immune system will essentially be at its weakest.

During this time, he is more susceptible to:
• Infection
• Fevers
• Nausea and vomiting
• Mouth and throat sores (mucositis)
• Stomach cramps
• Fatigue
• Loss of appetite
• General discomfort and weakness

All of these are expected side effects of the treatment, and the medical team is watching him very closely.

Today, on Day +6, Jesse is feeling very tired. He stayed in bed most of the day and is struggling with his appetite, though he is still managing to eat a little. We are taking it one day at a time.

If all goes as hoped, we are looking toward Day +14 and beyond for signs of engraftment — when his new bone marrow begins producing healthy blood cells and his counts start to rise. That will be a major milestone. There is a delicate balance right now between the immune-suppressing medications (which protect him from GVHD) and the new marrow establishing itself. This waiting period carries a lot of anticipation and suspense for us.

So at the moment, we are in the middle of the hardest stretch — watching, waiting, and trusting the process.

We are deeply grateful for your prayers, messages, and support. Please continue to keep Jesse in your thoughts and prayers as we move through these next crucial days toward engraftment.

With love and gratitude,
Clayton, Lee-Ann and Jesse

13/02/2026

Family Update #8

Tuesday 10th: Transplant day.

After completing his conditioning and chemotherapy, Jesse officially reached Day 0 of his stem cell transplant. This marked the start of the most critical phase of his treatment.

There is a great deal happening behind the scenes, so we wanted to share a brief update and to thank everyone for the ongoing love and support. We ask for prayers that Jesse’s body fully receives and accepts the transplant, for wisdom and discernment for the medical team, for strength and healing for Lee-Ann as she donates her bone marrow, and for peace and comfort to cover the entire family.

We are deeply grateful for every prayer, message, and act of support. Your love and faith mean more than words can express as we move forward through this next phase of Jesse’s transplant journey. 💙🙏

29/01/2026

Family Update #7

The Krause family — Clayton, Lee-Ann, and Jesse — are now three weeks into the NIH program in Washington, DC. Jesse has undergone numerous medical screenings and scans, including MRIs and CT scans. On the 20th January, Jesse had his testicular biopsy operation at Children’s National Hospital in Washington, DC. The procedure went well, and Jesse has recovered.

They are now in the process of concluding all appointments and interviews with the medical professional teams and are consolidating the final checks and balances in preparation for the transplant process. The confirmed commencement date is 4th February, 2026, which is labeled as Day -6. The transplant will take place on Day 0, and the conditional post-transplant process will continue through Day 100.

It has been an extremely tough time for the family; however, each day brings a positive step closer toward Jesse’s healing. Through it all, Jesse continues to show remarkable resilience and strength. The professional staff at the NIH have been exceptional, and Jesse is most certainly receiving the best care available.

We continue to pray for daily small wins and for overall success in the months ahead. As difficult as this journey will be for the family and little Jesse, we know that with God’s intervention, all will go well. Thank you again for all your love and support. 💙

09/01/2026

Bon courage, Jesse, Clay and Lee-Ann. We love you and are holding you in our prayers.

30/12/2025

Family Update #6

We have received great news from the NIH (National Institute of Health USA) as part of the outreach and communications. Jesse has now been formally accepted into their DOCK8 program. As the result of his acceptance Clayton, Lee-Ann and Jesse leave for Washington DC on the 9th January 2025 to start with the corrective process, which will take 3-6 months pending success and treatments responsiveness etc. Jesse will need to undergo a Testicular Biopsy as part of the corrective procedure for future fertility options. The upfront cost associated to this procedure is R468,000 and a further R64,000 for the freezing of his testicular stem cells for 10 years, thereafter Jesse will undergo another procedure when reaches his teen years.

Sadie, however, is too young to qualify for the NIH programme, and despite our best efforts, at this stage there is no confirmed treatment pathway available for her.

We are actively engaging with international transplant centres to determine the safest option for Sadie. During this time Sadie will continue her maintenance program of monthly Dupixent Injections and IV treatment administered whilst staying behind in SA with her grandparents.

Once again, the Krause family and foundation want to thank each and every one of you for your support, prayers and donations to our family crisis. It is massively appreciated and we are very positive Jesse and his family are on the right track to potential recovery.

This acceptance has been a God sent and we send Jesse and his parents off in our prayers. Keep a lookout for updates as Jesse starts his journey to what we pray leads to a great recovery.

The Sadie and Jesse Dock8 Foundation

20/05/2026

24/04/2026

18/03/2026

13/03/2026

05/03/2026

16/02/2026

13/02/2026

29/01/2026

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30/12/2025

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