The Sadie and Jesse Dock8 Foundation

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The Sadie and Jesse Dock8 Foundation Sadie & Jesse’s DOCK8 Journey. Raising awareness & urgent funding for their HSCT Transplant.

More information and regular updates on our website: https://sadiejessedock8.org

Hi everyone ❤️We wanted to give you all a little update on our trip to the NIH for Jesse’s six-month post-transplant che...
17/09/2026

Hi everyone ❤️

We wanted to give you all a little update on our trip to the NIH for Jesse’s six-month post-transplant check-up.

When we arrived, Jesse had a whole bunch of tests, blood work and assessments to get through before we could see the transplant team. We did a sonogram, lung function tests, full blood work and a number of other tests, and Jesse also saw several different specialists.

We then met with the transplant team on Wednesday, and they were very happy with his results. There was nothing that was concerning them, which was a huge relief for us.

Jesse’s skin is still looking a little flared, but the team feels that this is largely due to the immune-suppressant medication he is still taking. Because of how well everything else is going, they have now decided to start weaning him off the immune suppressants and see how his body responds.

They immediately stopped his Ruxolitinib (immune suppressant), and we are now starting to taper down his Tacrolimus over the next five weeks. The idea is to allow Jesse’s immune system to gradually become more active and stronger.

We also did a chimerism test, which checks how much of the blood and immune system is now made up of donor cells. Jesse’s result was 100% donor chimerism — meaning 100% of the cells tested were from his mom donor, Lee-Ann. ❤️

Jesse is still doing really well and remains 100% DOCK8 free.🙏🏼

Another huge milestone is just how much medication and treatment Jesse has been able to come off. He no longer needs the bleach baths, he is off most of his mouth medication, he is off all of his asthma medication, he is also completely off Dupilumab, which was used to treat his eczema and asthma, and he is off Cuvitru (immune globulin subcutaneous).

So, at the moment, our biggest focus is simply keeping Jesse safe and healthy.

We don’t want him getting sick or triggering an unnecessary immune response that could potentially cause problems or spark GVHD (graft-versus-host disease). So for now, we’re still being very careful — keeping him out of the sun as much as possible, keeping him away from other kids and avoiding situations where he could pick up infections.

Thankfully, that’s all going well at the moment.

As Jesse continues to come off the immune suppressants, we’re hoping that his immune system will strengthen enough for him to slowly start interacting more with people and kids and eventually get back to doing more of the things that a normal little boy should be doing.

Of course, there is still a big element of uncertainty. We’re praying that as we taper the immune suppressants, Jesse doesn’t develop any GVHD. If he does, the doctors would have to take a different approach and potentially put him onto another course of medication.

So although everything is looking very positive right now, the risks are still there, and it’s going to take some time before we know exactly how Jesse’s body is going to respond.

We also took an HLA testing kit with us for Sadie. We had her cheeks swabbed so that the NIH could begin looking at whether there might be a potential 10/10 match for her. A full match would obviously be preferable to having to use a haplo (half-match), such as a parent.

Unfortunately, there was an issue with the kit, and the NIH has asked us to do another one. We’ve therefore arranged another appointment with the transplant specialist team here in Pretoria, hopefully within the next week or so, so that we can get the new HLA testing sent off to the NIH. They will then start the search process on their side as well.

For now, we’re continuing to see Professor Reynders at the Unitus Transplant Specialised Unit in Pretoria, where Jesse will continue to have his regular check-ups.

Our next check-up at the NIH is scheduled for February, so it won’t be too long before we’re back in the States. 🇺🇸

All in all, we’re feeling very positive about where Jesse is at the moment. He is doing really well, his results were fantastic, and we’re incredibly grateful for how far he has come.

Thank you, as always, to everyone who continues to support us, pray for Jesse and follow his journey. ❤️
One step at a time. ❤️

Hi everyone,It’s been quite a while since we’ve done an update, and quite a lot has happened since our last one.As many ...
12/08/2026

Hi everyone,

It’s been quite a while since we’ve done an update, and quite a lot has happened since our last one.

As many of you know, Jesse has now been home for just over two months, and we’ve recently reached another massive milestone — six months post-transplant.

The last few months have certainly had their challenges. After returning home from the States, Jesse’s skin flared up quite badly. He developed a significant number of sores, pimples and skin problems, with the molluscum becoming particularly widespread across much of his body.

For those who may not know, molluscum is a small, pearly skin bump caused by a poxvirus. Jesse unfortunately went into the transplant with this virus already present, and because his immune system has never been strong enough to completely eradicate it, the lowering of his immune system with immunosuppressant medication has given the virus an opportunity to spread.

Managing this has been quite difficult. We’ve been working closely with his doctors, using various treatments and taking extra precautions with his skin to try to keep the molluscum and secondary skin infections under control while he remains on immunosuppressants.

Throughout all of this, Jesse has been having regular blood tests and check-ups, currently approximately every two weeks. One of the most important things they monitor is his tacrolimus level. Tacrolimus is one of the key immunosuppressant medications Jesse takes to help prevent GVHD, so keeping those levels within the correct range is incredibly important.

Here in South Africa, Jesse has been under the care of Professor Reinders, our transplant specialist, who has been working closely with the team at the NIH in Washington. We’ve also been seeing Dr Ashley, who has been monitoring Jesse’s general health and, amongst other things, performing his lung-function tests.

Despite all the challenges, Jesse has actually been doing really well. His skin has gradually been improving, and while he still has the occasional tummy issue, cramps and other little problems, he continues to progress in the right direction.

Now that we have reached the six-month milestone, it’s time for another very important step in Jesse’s journey.

We will be returning to the NIH in Washington in about a week’s time for his six-month post-transplant assessment.

This will be a particularly important round of check-ups, where the team will look closely at his blood counts, tacrolimus levels, immune system and overall progress. We are hopeful that, if everything continues to look good, they may be able to start reducing some of his immunosuppressant medication. This would allow Jesse’s immune system to gradually become more active again.

Of course, reducing immunosuppression also comes with its own risks, which is why this process has to be done very carefully and under close medical supervision.

While we are at the NIH, Jesse will also begin the process of re-vaccination. Following a bone marrow transplant, a child essentially has to rebuild their immune memory and repeat many of the vaccinations they originally received as a baby. So this will be another important step in getting Jesse’s immune system back up and running.

On Sadie’s side, things have also been challenging.

Sadie has been in and out of hospital a few times and has been battling a persistent bacterial infection affecting her chest and sinus passages. About two weeks ago, she underwent GPS-guided sinus surgery, which was done to remove polyps and clear out infection and other issues that were causing problems within her sinus system.

Thankfully, she also seems to be doing a little better, although it has certainly been a difficult period for her as well.

So, all in all, it has been a busy and challenging few months for our family. There have been plenty of nervous moments, plenty of doctors’ appointments and blood tests, and certainly a few times where we’ve wondered what the next hurdle would be.

But there have also been some really positive moments.

Both kids are doing well at the moment, and we are incredibly grateful for that.

We are now looking forward to getting back to Washington and the NIH, seeing the incredible team who have been part of Jesse’s journey from the beginning, and getting a much clearer picture of exactly where he is at six months post-transplant.

Once we have completed all of Jesse’s assessments, we’ll share another update with you with more detail on his blood counts, tacrolimus levels, immune system and the doctors’ outlook for the next stage of his recovery.

Thank you, as always, to everyone who continues to follow Jesse and Sadie’s journey.

We’ll keep you updated from Washington. ❤️

Update on Jesse here in Washington at the NIH.Today marks a massive milestone in his journey — Day 100 post-transplant. ...
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!

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

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