Max’s Story - Childhood Cancer Awareness Month
Max started chemotherapy on his 2nd birthday, after suffering with ‘dancing eye syndrome’ as a result of neuroblastoma. Now turning 3 he has finished treatment and is awaiting results - having also raised over £10,000 for Neuroblastoma UK.
Overnight Max lost the ability to walk, he was shaking uncontrollably, his eye movements were rapidly dancing around and he was unable to sleep due to constant full body spasms.
After being rushed through A&E the doctors had no idea what was happening. We spent the next 3 weeks in hospital whilst they performed every test they could to find out what was wrong. Every test kept coming back as normal, but we knew there was nothing normal about this. It was heart-breaking, Max spent the whole time in my arms - scared.
After weeks of not knowing, the stress of being in hospital and the mountain of tests performed, they finally diagnosed him with OMAS (Ospoclonus Myoclonus Ataxia Syndrome) a rare autoimmune disease where his immune system was attacking his brain, also known as ‘Dancing Eye Syndrome’.
The doctors told us this is a response from either a Neuroblastoma tumour or from a virus, and they needed to do further tests to try to find a tumour.
“After so much heartache from the last few weeks, the thought it might be cancer was just devastating.”
The urine and blood tests used to help diagnose neuroblastoma came back clear. A head MRI, chest X-ray, abdominal ultrasound - all clear. All the evidence so far was pointing towards a virus he had two weeks prior. Max then had a full body MRI and an MIBG scan.
They found a tumour in his pelvis.
They were unable to remove the tumour safely, he had surgery to take a biopsy and insert a Port-a-Cath for treatment. The biopsy results came back confirming Neuroblastoma and Max started chemotherapy the very next day on his 2nd birthday.
Max had 6 rounds of Chemotherapy, open abdominal surgery and 6 rounds of retinoid therapy to treat the neuroblastoma. He also had 9 months of high dose steroid pulses to treat his OMS.
The treatment was tough on him, but he always managed to bounce back like nothing had happened, he just always wanted to have fun.
“He is so inspiring and constantly gives us the strength we need to get through this as a family.”
Max is now running around like a normal, happy, healthy toddler. As a family with the help of our wider family and friends, we have raised £10,673.20 to help fund research for Neuroblastoma UK.
Max has just finished treatment and we are awaiting results from his end of treatment MRI scan, one week before his 3rd birthday. We hope this birthday will be a lot different to his last.
A big thank you to Grace for sharing Max’s story.
Research into Opsoclonus Myoclonus Syndrome
Opsoclonus Myoclonus Syndrome (OMS), also known as 'Dancing Eye Syndrome,' is a rare neurological condition often associated with neuroblastoma. Its key features include:
Unsteadiness (ataxia)
Jerky movements of the limbs (myoclonus)
Rapid, involuntary eye movements in all directions (opsoclonus)
Marked irritability and sleep disturbance
An international study on OMS, ‘UK Multicentre Study of Children with Opsoclonus Myoclonus Syndrome’ (UMSCOM), has provided valuable insights into treatment and outcomes for this rare condition. It opened recruitment in 2013 (with some of its necessary funding provided by Neuroblastoma UK). This study recruited 101 patients from across Europe, mainly from France and the UK. While most OMS patients (around 66%) have neuroblastoma, the study also included patients without neuroblastoma for a comprehensive analysis.
In the first trial of its kind all these patients with OMS received standardised treatment: those with neuroblastoma had their neuroblastoma managed according to European guidelines, and for everyone the neurological symptoms were managed with an escalating protocol starting with steroids, followed by cyclophosphamide chemotherapy and then rituximab (a monoclonal antibody) based on the response of their OMS symptoms. This organised clinical trial approach aimed to collect information and achieve uniformity in treatment and to improve the overall oncology and neurological outcome of children with this rare condition.
Although the study is now closed to new participants, it continues to follow up the enrolled patients, collecting data on their oncological and neurological progress. These ongoing follow up assessments are crucial for understanding more about the long-term outcomes of this complicated condition. Full results from the research are expected to be published in 2025.
Funding vital research. Saving young lives.
Every week in the UK, two families receive the devastating news that their child has neuroblastoma. This rare and often aggressive cancer not only claims young lives but also subjects children to gruelling treatments that can affect them well into adulthood.
We raise money to fund vital research to develop new and more effective treatments for all children with neuroblastoma. But we need your help. This Child Cancer Awareness month please donate today and join us in our efforts.
