Grayson’s BOS journey

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Grayson’s BOS journey ✨ Bohring-Opitz Syndrome
🎗️ Stage 3 Liver Cancer Survivor
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His journey may look different, but his worth never will. 🤍Milestones don’t define Grayson. His existence is enough. 💛💙 ...
14/10/2026

His journey may look different, but his worth never will. 🤍

Milestones don’t define Grayson. His existence is enough. 💛💙

8 July 2025 Since birth, feeding has been one of our biggest challenges. Grayson had been unable to establish effective ...
13/10/2026

8 July 2025

Since birth, feeding has been one of our biggest challenges. Grayson had been unable to establish effective sucking, leaving him dependent on tube feeding while we waited and hoped for progress. We met with the lactation specialist today to try a premature pacifier, breastfeeding and different bottles. His little premature NUK pacifier seemed to be his favourite, and watching him suckle on it gave us a glimmer of hope.

Breastfeeding, however, simply wasn't working. As heartbreaking as it was to accept, we decided to stop trying at the breast. It was becoming emotionally draining and causing unnecessary stress for both of us. Sometimes, being a medical mum means learning to let go of what you imagined motherhood would look like and focusing on what your baby needs most.

Then came our breakthrough. Grayson took to the bottle attached to my breast pump! Of all the bottles we tried, it was the one we least expected to work. Slowly and patiently, he managed approximately 4 ml. It might seem like such a tiny amount, but to us, it was enormous. We still needed to find a suitable bottle with a safer, slower flow, and tube feeding remained essential, but today showed us that progress was possible.

There was more good news: his CRP, an infection marker, had dropped from 33 to 7.6. Seeing those numbers come down brought such relief after everything we had been worrying about. We were also given a room right next to the NICU, meaning I could be just a door away from my precious boy instead of feeling so far from him.

I had been terrified of having to leave the hospital without him nearby. I prayed while holding him, asking God to heal his lungs, strengthen his little body and help him learn to feed. Every tiny sip felt like an answered prayer.

We still had so many unanswered questions about Grayson's medical journey and what the future would hold. We didn't yet have a diagnosis to explain everything he was facing, but today reminded us that even in the uncertainty, there could be progress.

Today, those small things felt like miracles. And all I wanted was to keep holding my beautiful boy until the day we could finally bring him home. ❤️

💙 POOR POSTNATAL WEIGHT GAIN & BOHRING-OPITZ SYNDROME (BOS) 💙For children living with BOS, gaining weight can be a chall...
12/10/2026

💙 POOR POSTNATAL WEIGHT GAIN & BOHRING-OPITZ SYNDROME (BOS) 💙

For children living with BOS, gaining weight can be a challenge. Feeding difficulties, vomiting, gastrointestinal problems and other medical complications may all play a role. 🍼

Research highlights how common growth and feeding difficulties are in people with ASXL1-related BOS—but every child’s journey is different.

✨ With individualised nutritional support, regular growth monitoring and coordinated medical care, we can help children receive the support they need.

💛 Remember: adequate nutrition is essential, but it cannot guarantee typical growth. Progress is about more than the number on a scale.

Swipe through to learn about the causes, research, management strategies and warning signs.

📚 References are included on the final slide.

Share this post to help raise awareness and understanding of Bohring-Opitz Syndrome.

08/10/2026

It’s been a roller coaster of a year 🎢🎗️

7 July 2025Today brought a small but encouraging moment during Grayson’s time in the NICU.Before visiting him, I express...
30/09/2026

7 July 2025

Today brought a small but encouraging moment during Grayson’s time in the NICU.

Before visiting him, I expressed 30 ml of breast milk. After spending some time with him, I pumped again and was able to express 70 ml.

Although this may seem like a small detail, the increase was significant and encouraging. It was also a reminder that maintaining milk supply while separated from your newborn in the NICU can be challenging, particularly during a time filled with uncertainty and medical concerns.

Grayson was still requiring close monitoring and medical support, and we were continuing to wait for answers about why he was struggling with feeding and other aspects of his health. At this stage, we did not yet have a diagnosis or a clear explanation for everything he was experiencing.

For now, we were taking each positive development as it came.

The increase in expressed milk was one small thing that went right on a day when there were still many unanswered questions.

One day, one milestone, one step at a time.

The roller coaster didn’t stop at the top. 🎢💙Yesterday, we sat at the very top of that terrifying incline, waiting for G...
29/09/2026

The roller coaster didn’t stop at the top. 🎢💙

Yesterday, we sat at the very top of that terrifying incline, waiting for Grayson to come back from surgery.
We knew there would be fear. We knew there would be unknowns. But there are some things you simply cannot prepare your heart for.

Today, we received news that has left us with more questions than answers. During yesterday’s surgery, one of the tumours that had been seen on Grayson’s CT scan could not be physically located in theatre. The scans show a tumour. But when the surgeons were operating, they could not see or find that tumour. And of course, that is concerning. We don’t yet know exactly what this means for Grayson’s road ahead. There is a possibility that another surgery may eventually be needed, or that radiation could become part of his treatment plan. But right now, we don’t have those answers.

And so, in the middle of all this uncertainty, we are choosing faith. Because if there is one thing I have learned through Grayson’s journey, it is that sometimes there is absolutely nothing left for a parent to do except pray. So today, I am asking for a miracle.

I am faithfully asking God to remove this tumour from existence. To let the tumour that was seen on the scan but could not be found in surgery simply not be there anymore. I know there will be people who may not understand that kind of faith.

But I do.

I believe in the power of prayer. And I believe that when a child is fighting for his life, there is nothing too big to ask God for. So I’m asking everyone who loves Grayson, who has prayed for him before, who has followed his story, or who simply believes in the power of prayer: Please pray with us.

And then there is our little boy…Grayson is currently on life support. After everything his little body has endured — chemotherapy, surgery, anaesthesia and the trauma of the last few months — he needs time. We don’t know yet when he will be strong enough to breathe completely on his own. And for now, that’s okay.

Right now, we are giving his body the opportunity to rest, recover and heal 🙏🏼🩵

🧠 MICROCEPHALY & BOHRING-OPITZ SYNDROMEMicrocephaly — a smaller-than-expected head circumference — is a recognised featu...
29/09/2026

🧠 MICROCEPHALY & BOHRING-OPITZ SYNDROME

Microcephaly — a smaller-than-expected head circumference — is a recognised feature of ASXL1-related Bohring-Opitz Syndrome (BOS).

But a head measurement is only one piece of the picture. 💙

There is currently no treatment that directly reverses genetic microcephaly. Instead, care focuses on supporting the whole child — monitoring growth and development, addressing nutrition and feeding, assessing hearing and vision, identifying sleep or neurological concerns, and providing therapies such as physiotherapy, occupational therapy and speech-language therapy when needed. 🌱

Most importantly, microcephaly does not define a child's abilities, personality or potential.

For families navigating BOS, understanding the symptom can help us ask better questions, identify support early and advocate for truly individualised care. 💛

Small doesn't mean less.

Today, we ride the roller coaster again. 🎢💙There is no advice you can really give a parent before their child goes in fo...
28/09/2026

Today, we ride the roller coaster again. 🎢💙

There is no advice you can really give a parent before their child goes in for life-changing surgery. You can have all the faith in the world — and I do. I have faith in God. I have faith in Grayson. I have faith in the incredible medical team caring for him. And yet, somewhere underneath all that faith, there is still that hum of panic. That quiet, relentless worry that sits in the background. For me, it feels like being on a roller coaster, listening to that continuous click… click… click… as the carriage slowly climbs higher and higher up the incline.

You know there is a drop coming.

You just don’t know what is waiting for you on the other side. I’ve been on this roller coaster twice before. But this time, it feels like we’ve climbed a kilometre into the sky. Today, our beautiful Grayson is going into surgery for a liver resection. A surgery that could change his life. A surgery that could save his life. A surgery that brings us one enormous step closer to saying goodbye to the cancer that has taken so much from our little boy. And while today is filled with hope, it is also filled with fear. Because we know this isn’t the end of Grayson’s road.

But today, none of that matters as much as one thing: Getting our boy safely through this operation. So today, my biggest appeal is not for anything complicated. Please pray for my son. 🙏🏻 Pray for his surgeons. Pray for his anaesthetists and every member of the medical team caring for him. Pray for steady hands, clear minds and wisdom in every decision. Pray for his little body to be strong enough to withstand everything it is about to go through. Pray for his liver, his heart, his lungs and every tiny part of him. Pray that the surgery is successful. Pray that the cancer is removed completely.Pray that there are no unexpected complications. And most importantly, pray that Grayson comes back to us safely — stronger, healthier and cancer-free.

Our little boy has already fought battles no child should ever have had to face.

Today, he fights another one.

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6 July 2025Grayson’s second day in the NICU brought another medical development.Because there had been a prolonged ruptu...
27/09/2026

6 July 2025

Grayson’s second day in the NICU brought another medical development.

Because there had been a prolonged rupture of membranes before his birth, the NICU team routinely checked his infection markers on day two. Unfortunately, Grayson’s infection marker was elevated.

This provided a possible explanation for why he was still requiring oxygen and was not yet managing to wean from respiratory support as hoped.

As a result, the medical team started a five-day course of antibiotics. By this point, Grayson was already on day two of treatment.

At this stage, there were still many unanswered questions. We knew there was an indication of infection, but we were still monitoring his response to treatment and watching his oxygen requirements closely.

His care remained focused on stabilising his breathing, treating the suspected infection and determining why he continued to require additional support.

There was no broader diagnosis at this point. We were still very much in the early stages of understanding why Grayson was having such a difficult start and waiting to see how he would respond over the coming days.

For now, the focus was simply on getting the infection under control, supporting his breathing and taking each day as it came.

🫁 RECURRENT PNEUMONIA & BOHRING-OPITZ SYNDROMERespiratory infections can be a significant part of life with ASXL1-relate...
26/09/2026

🫁 RECURRENT PNEUMONIA & BOHRING-OPITZ SYNDROME

Respiratory infections can be a significant part of life with ASXL1-related Bohring-Opitz syndrome (BOS), particularly during infancy and early childhood.

But recurrent pneumonia isn't necessarily simply about a “weak immune system.” In BOS, several factors can overlap — including feeding and swallowing difficulties, reflux and vomiting, aspiration, airway abnormalities, sleep-disordered breathing and difficulty clearing secretions.

Understanding why pneumonia keeps happening can be an important part of protecting vulnerable lungs. 💙

Management may involve feeding and swallowing assessments, reflux management, airway-clearance strategies, respiratory monitoring, sleep studies, infection prevention and other supportive treatments when appropriate.

And there is an encouraging finding: recurrent infections generally appear to become less frequent with age, although every person with BOS is different. 🌱

For BOS families, respiratory health can mean looking beyond the infection itself and asking:

Why is this happening — and what can we do to protect the lungs?

🧬 One gene. Many systems. One journey.

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