top of page

Oakley's Journey: A Call for Support in the Face of Microcephaly, Lissencephaly, and Epilepsy





Follow: @acornupdates


In the tapestry of life, there are stories that touch the very core of our humanity, stories that unfold with challenges and triumphs, and stories that inspire us to rally together in support. Oakley's journey is one such narrative—a tale of resilience, love, and a community coming together for a little boy facing the complexities of Microcephaly, Lissencephaly, and Epilepsy.


Oakley, a tiny warrior, arrived in this world, bringing immeasurable joy to his parents. However, their journey into parenthood took an unexpected turn when, at just two days old, they received the heart-wrenching news that Oakley has a rare brain condition. The diagnosis cast a shadow of uncertainty, revealing the potential challenges that lay ahead—blindness, deafness, immobility, and the need for lifelong care.


As parents, they made a solemn pact—a commitment to weather the storm together and not let the diagnosis shatter their family. Microcephaly and Lissencephaly were formidable adversaries, but Oakley's family stood undeterred, embracing the privilege of being his guides through the intricacies of life.


The initial days were a whirlwind of emotions as Oakley spent a week in intensive care, separated from his parents due to the cruel constraints of circumstance. Frequent visits to the hospital became their routine, each moment marked by a longing to hold their fragile son close.


Months passed, and new challenges emerged. A sudden and unexpected seisure marked a turning point. Over six weeks, Oakley's seisures intensified, culminating in a harrowing episode of 'status epilepticus.' Faced with the heart-wrenching decision to electively intubate Oakley, his parents embarked on an agonising journey into the unknown.


The scene in the hospital room was a tableau of parental despair—Oakley, sedated and connected to machines, his tiny frame bearing the weight of a medical arsenal aimed at quelling relentless seisures. The decision to transport him to Great Ormond Street Hospital added another layer of anguish, but miraculously, Oakley's condition stabilised, paving the way for extubation.


From that pivotal moment, Oakley's journey has been a tapestry woven with hospital stays, seisures, and an unwavering determination to provide him with the best possible life. A complex form of epilepsy further compounds the challenges, demanding constant medication adjustments and meticulous care. The top neurologist in the country now specialises in Oakley's conditions, offering a glimmer of hope amid the uncertainties.


Yet, the NHS's reactive approach leaves Oakley's family yearning for proactive interventions. Amid their quest for a better life for Oakley, they've discovered DMI (Dynamic Movement Intervention)—a specialised therapy showing remarkable results for children with neurodisabilities. However, this avenue comes at a financial cost, adding to the already burgeoning expenses of aids, sensory equipment, and potential additional therapies.


The road ahead is long, filled with the promise of intensive therapy programs and the potential for a brighter future. Oakley's family envisions monthly DMI sessions, equating to approximately £12,000 per year—a cost that extends beyond the horizon of their current resources.


This is where the community becomes an integral part of Oakley's narrative. A plea for support echoes through the lines of Oakley's story, a call to contribute towards a fundraiser that seeks to provide him with the therapy, aids, and equipment needed for a life filled with possibilities.


As we navigate the complexities of Oakley's journey, each donation becomes a beacon of hope, a testament to the collective strength of a community rallying behind a little boy and his family. The challenges may be formidable, but with each act of kindness, we affirm that Oakley is not alone—that his story, intertwined with Microcephaly, Lissencephaly, and Epilepsy, is one that resonates with hearts around the world.


If you feel compelled to contribute, your support will be a lifeline for Oakley and his family, lighting the path towards a future where his potential knows no bounds.



Together, we can make a difference in Oakley's journey—one filled with love, resilience, and the unwavering belief that, as a community, we can be the change in this little warrior's world.


Best wishes,



Rising Above: Jack Fitzwater's Battle with Ulcerative Colitis




In the world of football, Jack Fitzwater, the 26-year-old defender, has showcased his prowess on the pitch, making over 100 appearances for Scottish Premiership side Livingston and joining Exeter City last summer. Yet, behind the scenes, Fitzwater grappled with a silent adversary that threatened to disrupt not only his career but his daily life.


"I was going to the toilet between 20-30 times a day. It was embarrassing and difficult from a mental and physical side. I was thinking to myself deep down, am I going to have to quit football?" Fitzwater candidly shared his struggles with BBC Sport.


As someone intimately acquainted with the challenges of ulcerative colitis, I resonate deeply with Fitzwater's journey. Diagnosed in December 2000, I am all too familiar with the debilitating nature of this illness. Fitzwater's openness about his experiences sheds light on the often-overlooked battles individuals face, even those seemingly at the peak of physical fitness.


The journey began with an urgency to visit the toilet, a seemingly innocuous issue that snowballed into something more ominous. "Every time I went to the toilet, there was blood in it. After matches, I was finding that my recovery was taking longer; I was tired all the time, no matter how much sleep I got," he revealed.


Hiding behind a facade of wellness, Fitzwater masked his symptoms until a breaking point during a family holiday in Ibiza. The relentless urgency to use the toilet became an overwhelming struggle, prompting him to seek medical help upon his return.


It was then that Fitzwater received a severe diagnosis - ulcerative colitis. A condition, unfamiliar to him, where the colon and rectum become inflamed, causing recurring diarrhoea, stomach pain, and a need for regular bowel movements. Despite being a robust athlete, Fitzwater discovered that health battles don't discriminate.


"I was waking up at 03:00 in the morning, going downstairs to reception and going to local toilets outside of the hotel, just to try and disguise it. I didn't want my family to know about it at the time," he shared, shedding light on the emotional toll of the condition.


Breaking the silence around his health, Fitzwater opened up about his struggles during Crohn's and Colitis Awareness Week, aiming to destigmatise seeking help. "I think as a man, we think there's a stigma around not going to see your doctor - that it's a weakness and it's embarrassing. But it doesn't really pass unless you've got the right medication to deal with it."


The prevalence of ulcerative colitis is highlighted by Fitzwater's inclusion among the 296,000 individuals in the UK diagnosed with the condition. Despite the challenges, Fitzwater emphasises the importance of awareness, understanding, and access to proper medication.


"Because it's a hidden disability and people see a young, fit, healthy man using disabled toilets, they might give me a strange look. But little things like the card and the key are massive for the community that I'm now a part of," Fitzwater expressed.


Embracing his role as a member of Crohn's and Colitis UK, Fitzwater encourages dialogue and support for those facing similar challenges. His journey underscores the resilience required not just on the football field but in overcoming personal adversities with grace and strength.


"I knew of the word Crohn's but not colitis, so then I went on Instagram and Twitter to check out what it was. You think it's the end of the world at the time. But then when you know there's medication that can help you, you feel better about it," he concludes, emphasising the power of awareness and the crucial role medication plays in managing the condition.


As someone who has navigated the complexities of ulcerative colitis, I stand in solidarity with Fitzwater and echo his call for open conversations, understanding, and support for those battling this often-invisible illness.


Best wishes,









bottom of page