Callum Murphy is an aide to a Shadow Minister, a school governor and a fundraiser for Acorns Hospice.
I learned what duty meant long before I ever understood politics, because it started at home with my brother, Champ.
For most of my childhood and early adult life, my family lived around the needs of my older brother, Kieran Murphy, who we always called “Champ”. He had lissencephaly, a rare neurological condition sometimes known as “smooth brain”, which meant he lived with profound disabilities, the inability to speak, severe epilepsy, complex medical needs and constant vulnerability. He died in 2022, aged just 23, after a lifetime of battles.
Like many young carers across Britain, I grew up quickly.
I was administering medication before I had really learned what “normal life” even looked like. Before I had any real independence, I was learning how to recognise the first warning signs of a seizure, how to support him safely through them, how to lift and move him carefully, and how to live with the constant background anxiety that something could change in an instant.
Families dealing with conditions like lissencephaly do not get the luxury of switching off. Care becomes the rhythm of life itself.
And yet, despite all of that, what stays with me most is not the hardship but the joy. I remember smiles. Listening to music together. Day trips in our wheelchair-adapted Renault Trafic van. Cuddling him when he was distressed, holding his hands and feeling him relax. The small, wordless moments of connection that matter far more when speech is not possible. I remember being his brother first.
Rare diseases are often spoken about as though they sit at the edges of medicine, affecting only a handful of families. In reality, they touch millions across the country. Behind every diagnosis is an entire network quietly holding things together – parents becoming nurses overnight, siblings becoming carers, grandparents stepping in wherever they can.
Conservatives should be proud of what has already been achieved in this space in government. Much of that progress was driven by a long-standing focus on genomics and rare disease science, championed by David Cameron and the establishment of Genomics England, which has helped transform how we understand and diagnose rare conditions.
The England Rare Diseases Action Plan marked further important progress. It recognised something families like mine have always known – the hardest part is often not the diagnosis itself, but the exhausting process of navigating fragmented services, delayed testing, and inconsistent support.
Its focus on genomics, newborn screening, improved diagnosis and stronger rare disease research is significant. Britain is now one of the global leaders in genomic medicine, and that is beginning to change what is possible for families affected by rare diseases and conditions.
For families today, there is a far greater chance of getting answers than there was when Champ was born. That progress should be celebrated.
But we should also be honest that for too many families, the reality remains relentlessly difficult.
Lissencephaly is one of the cruellest conditions imaginable. There is no cure. Care is entirely supportive. Many children experience drug-resistant epilepsy, feeding difficulties, respiratory complications and profound developmental disability. Diagnosis can still take time because the condition is genetically complex, with more than 30 associated genes identified.
Meanwhile, parents are expected to coordinate neurologists, gastroenterologists, therapists, social care teams and education services while trying to keep family life intact.
And too often, siblings quietly carry responsibilities that go unseen.
Young carers are among the most overlooked people in our society. You go to school after a night broken by seizures. You cancel plans because your family cannot safely leave the house. You grow up with a level of emotional responsibility that most adults would struggle to carry.
That is why respite care is not optional. It is essential.
Hospices like Acorns Children’s Hospice play a vital role not just in caring for children, but in sustaining entire families. They provide respite, dignity, and breathing space in lives that are otherwise unrelenting. Yet too often, they remain in a constant state of uncertainty over funding.
That cannot be right.
There are clear areas where government can and should now go further.
We should accelerate early diagnosis through expanded genomic sequencing and improved training so that clinicians are better equipped to recognise rare neurological conditions earlier.
We should increase investment in research into rare neurological disease, particularly in areas like gene therapy and treatments for drug-resistant epilepsy, where the science is moving quickly but translation into real-world care still lags behind.
We should build properly joined-up rare disease care pathways, so families are not left navigating a maze of disconnected services but instead receive coordinated support from the point of diagnosis.
We should strengthen support for carers and siblings, including better recognition of young carers in schools and health systems, alongside more reliable access to respite care.
And we should support national rare disease registries to improve research, understanding, and access to clinical trials, ensuring families are not left invisible in the system.
None of this is about reinventing the wheel as such. It is about making the existing one work more coherently for families who have no choice but to rely on it every day.
Conservatives should always be confident making the moral case for strong public services where they are needed most. This is not about dependency; it is about responsibility – to family, to community, and to those who cannot care for themselves.
My brother never had the benefit of the advances that are now beginning to reshape what is possible in rare disease medicine. But I hope that by sharing Champ’s story, I can help keep pushing in the right direction – towards a system that diagnoses earlier, supports families more consistently, and properly recognises the reality of what living with rare neurological conditions actually demands.
Callum Murphy is an aide to a Shadow Minister, a school governor and a fundraiser for Acorns Hospice.
I learned what duty meant long before I ever understood politics, because it started at home with my brother, Champ.
For most of my childhood and early adult life, my family lived around the needs of my older brother, Kieran Murphy, who we always called “Champ”. He had lissencephaly, a rare neurological condition sometimes known as “smooth brain”, which meant he lived with profound disabilities, the inability to speak, severe epilepsy, complex medical needs and constant vulnerability. He died in 2022, aged just 23, after a lifetime of battles.
Like many young carers across Britain, I grew up quickly.
I was administering medication before I had really learned what “normal life” even looked like. Before I had any real independence, I was learning how to recognise the first warning signs of a seizure, how to support him safely through them, how to lift and move him carefully, and how to live with the constant background anxiety that something could change in an instant.
Families dealing with conditions like lissencephaly do not get the luxury of switching off. Care becomes the rhythm of life itself.
And yet, despite all of that, what stays with me most is not the hardship but the joy. I remember smiles. Listening to music together. Day trips in our wheelchair-adapted Renault Trafic van. Cuddling him when he was distressed, holding his hands and feeling him relax. The small, wordless moments of connection that matter far more when speech is not possible. I remember being his brother first.
Rare diseases are often spoken about as though they sit at the edges of medicine, affecting only a handful of families. In reality, they touch millions across the country. Behind every diagnosis is an entire network quietly holding things together – parents becoming nurses overnight, siblings becoming carers, grandparents stepping in wherever they can.
Conservatives should be proud of what has already been achieved in this space in government. Much of that progress was driven by a long-standing focus on genomics and rare disease science, championed by David Cameron and the establishment of Genomics England, which has helped transform how we understand and diagnose rare conditions.
The England Rare Diseases Action Plan marked further important progress. It recognised something families like mine have always known – the hardest part is often not the diagnosis itself, but the exhausting process of navigating fragmented services, delayed testing, and inconsistent support.
Its focus on genomics, newborn screening, improved diagnosis and stronger rare disease research is significant. Britain is now one of the global leaders in genomic medicine, and that is beginning to change what is possible for families affected by rare diseases and conditions.
For families today, there is a far greater chance of getting answers than there was when Champ was born. That progress should be celebrated.
But we should also be honest that for too many families, the reality remains relentlessly difficult.
Lissencephaly is one of the cruellest conditions imaginable. There is no cure. Care is entirely supportive. Many children experience drug-resistant epilepsy, feeding difficulties, respiratory complications and profound developmental disability. Diagnosis can still take time because the condition is genetically complex, with more than 30 associated genes identified.
Meanwhile, parents are expected to coordinate neurologists, gastroenterologists, therapists, social care teams and education services while trying to keep family life intact.
And too often, siblings quietly carry responsibilities that go unseen.
Young carers are among the most overlooked people in our society. You go to school after a night broken by seizures. You cancel plans because your family cannot safely leave the house. You grow up with a level of emotional responsibility that most adults would struggle to carry.
That is why respite care is not optional. It is essential.
Hospices like Acorns Children’s Hospice play a vital role not just in caring for children, but in sustaining entire families. They provide respite, dignity, and breathing space in lives that are otherwise unrelenting. Yet too often, they remain in a constant state of uncertainty over funding.
That cannot be right.
There are clear areas where government can and should now go further.
We should accelerate early diagnosis through expanded genomic sequencing and improved training so that clinicians are better equipped to recognise rare neurological conditions earlier.
We should increase investment in research into rare neurological disease, particularly in areas like gene therapy and treatments for drug-resistant epilepsy, where the science is moving quickly but translation into real-world care still lags behind.
We should build properly joined-up rare disease care pathways, so families are not left navigating a maze of disconnected services but instead receive coordinated support from the point of diagnosis.
We should strengthen support for carers and siblings, including better recognition of young carers in schools and health systems, alongside more reliable access to respite care.
And we should support national rare disease registries to improve research, understanding, and access to clinical trials, ensuring families are not left invisible in the system.
None of this is about reinventing the wheel as such. It is about making the existing one work more coherently for families who have no choice but to rely on it every day.
Conservatives should always be confident making the moral case for strong public services where they are needed most. This is not about dependency; it is about responsibility – to family, to community, and to those who cannot care for themselves.
My brother never had the benefit of the advances that are now beginning to reshape what is possible in rare disease medicine. But I hope that by sharing Champ’s story, I can help keep pushing in the right direction – towards a system that diagnoses earlier, supports families more consistently, and properly recognises the reality of what living with rare neurological conditions actually demands.