A Grandmother’s Fight for Answers
When baby Lily struggled to feed and gain weight, her family knew something was wrong. But it took months of worry, repeated appointments and a private paediatrician’s intervention before doctors discovered an optic pathway glioma. Her grandmother, Hayley Conroy, shares their journey through four years of chemotherapy, sight loss and finding a voice in brain tumour advocacy.
When a Baby’s Failure to Gain Weight Was a Sign of Something More Serious
When Lily was born in November 2016, there was no obvious reason to suspect that she had a brain tumour.
She was a healthy-looking baby, weighing 9lb 4oz at birth.
Her family were delighted to welcome her into the world.
But it wasn’t long before concerns began to grow.
Lily was struggling to feed properly, and despite her family’s efforts, she was not putting on weight as expected.
Initially, her symptoms were thought to be related to lactose intolerance.
But the feeding difficulties continued, and Lily began losing weight.
Her family repeatedly sought medical advice, trying to understand why a baby who had been born at such a healthy weight was becoming increasingly underweight.
Eventually, their concerns led to further investigations.
An MRI scan revealed a rare brain tumour affecting Lily’s visual pathways.
She was diagnosed with an optic pathway glioma, alongside a rare condition called diencephalic syndrome.
When her grandmother, Hayley Conroy, joined me on the Aunty M Brain Tumours Talk Show in April 2024, she shared the family’s experiences of trying to get answers, supporting Lily through years of treatment and raising awareness so other families might recognise the warning signs sooner.
Their story is about a little girl living with a rare brain tumour.
But it is also about the grandparents, parents and wider family members whose lives can be completely changed by a child’s diagnosis.
The Early Symptoms That Were Difficult to Explain
One of the most frightening parts of Lily’s story is how difficult it was for her family to get an explanation for her symptoms.
From an early age, Lily struggled with feeding.
She was not gaining weight as she should have been, despite the family’s attempts to improve her feeding and nutrition.
Doctors initially suggested lactose intolerance.
Other explanations focused on Lily being a fussy eater.
But her family could see that something was not right.
Her weight continued to fall.
For a baby who had been born weighing more than nine pounds, the change was particularly concerning.
What made the situation even more confusing was Lily’s behaviour.
Rather than appearing constantly tired or lethargic, she could be remarkably active and happy.
At times, she seemed almost unusually energetic.
It was difficult to reconcile that cheerful, lively little girl with the worrying changes happening to her body.
The family continued asking for help.
But finding the real cause took time.
When a Private Paediatrician Took the Family’s Concerns Seriously
As Lily’s condition deteriorated, the family sought another medical opinion.
They arranged an appointment with a private paediatrician.
This became an important turning point.
The paediatrician recognised that Lily’s symptoms needed urgent investigation.
Rather than treating the difficulties as another ordinary feeding problem, further hospital assessment was arranged.
During the investigations, medical professionals noticed an unusual flickering movement in Lily’s eyes.
This symptom, which can be associated with abnormal involuntary eye movements called nystagmus, prompted concern about a possible neurological condition.
An MRI scan was arranged.
The results revealed a brain tumour.
For a family who had spent so long trying to understand Lily’s feeding difficulties and weight loss, the diagnosis was devastating.
They finally had an explanation.
But it was one nobody had expected.
Listen to Hayley tell their story in full in the Aunty M Brain Tumours Talk Show interview below, or keep reading for the written version
Diagnosed With an Optic Pathway Glioma at One Year Old
Lily was diagnosed with an optic pathway glioma when she was just one year old.
An optic pathway glioma is a tumour that develops along the visual pathways, which carry information from the eyes to the brain.
These pathways include the optic nerves and optic chiasm, where the visual information from both eyes passes towards the brain.
Depending on its location, an optic pathway glioma can affect vision and nearby structures involved in growth, appetite and hormone regulation.
For Lily, the tumour was also associated with diencephalic syndrome.
This helped explain why she had been losing so much weight despite being unusually active.
The diagnosis changed everything.
Instead of worrying about feeding difficulties alone, Lily’s family were now facing the reality of a rare childhood brain tumour.
They needed to understand the diagnosis, the treatment options and what it could mean for her future.
Understanding Lily’s Diencephalic Syndrome
Diencephalic syndrome is a rare condition that can occur in young children with tumours affecting the hypothalamic region of the brain.
The hypothalamus helps regulate several important bodily functions, including appetite, growth, energy balance and hormone activity.
When this area is affected, a child may experience severe difficulty gaining weight, even when their height continues increasing.
Some children may also appear unusually alert, active or happy.
This can make the condition difficult to recognise.
Parents may be told their child is simply not eating enough, or that the weight loss is caused by a feeding problem.
But the underlying cause can be much more complicated.
For Lily, the diagnosis of diencephalic syndrome finally connected several symptoms that had previously seemed difficult to explain.
Her poor weight gain, extreme activity and unusual eye movements were part of a much larger medical picture.
It is one of the most important aspects of Hayley’s interview because it highlights why persistent concerns about an infant’s growth and development should be taken seriously.
Starting Treatment at Great Ormond Street Hospital
Following Lily’s diagnosis, her care was taken over by specialists at Great Ormond Street Hospital in London.
The hospital is experienced in treating children with complex and rare medical conditions, including brain tumours.
Lily’s family were initially told that her chemotherapy treatment might last approximately one year.
Although the prospect was frightening, they had a treatment plan.
They could begin looking towards a point when Lily might finish chemotherapy and life might become more settled.
Unfortunately, things were not that straightforward.
Lily’s tumour proved difficult to control.
What was initially expected to be around a year of chemotherapy became a journey lasting approximately four years.
During that time, Lily underwent multiple treatment regimens.
For her family, the uncertainty was exhausting.
Each new treatment brought hope that the tumour might respond.
But there were also setbacks, complications and frightening reactions.
Four Years of Chemotherapy for Lily’s Optic Pathway Glioma
Lily underwent eight different types or regimens of chemotherapy during her treatment journey.
For a child diagnosed so young, this meant growing up with hospitals and medical appointments as a regular part of life.
Chemotherapy can be used to treat selected childhood optic pathway gliomas, particularly when the tumour is progressing or affecting vision and surgery would carry significant risks.
The aim is often to control tumour growth while protecting as much neurological function as possible.
However, not every tumour responds in the same way.
Lily’s treatment needed to be adjusted repeatedly.
Her family experienced the disappointment of one approach not working as hoped, followed by the uncertainty of trying another.
Allergic Reactions and Anaphylactic Shock
Among the most frightening complications were Lily’s allergic reactions to treatment.
Hayley described episodes of anaphylactic shock.
Anaphylaxis is a severe allergic reaction that can be life-threatening and requires immediate medical treatment.
For Lily’s family, these episodes added another layer of fear to an already difficult situation.
Chemotherapy was supposed to help control the tumour.
But some of the drugs could also cause dangerous reactions.
The family had to place their trust in Lily’s specialist medical team as treatment decisions became increasingly complicated.
It was not simply a case of completing a planned course of chemotherapy.
It was years of adapting, reassessing and trying to find ways to control the disease.
The Emotional Impact on Lily’s Family
When a young child develops a brain tumour, the entire family is affected.
Parents may find themselves managing hospital appointments, treatment decisions, medication and the emotional needs of their child.
Brothers and sisters may struggle to understand why family life has changed.
Grandparents can feel an enormous sense of worry while also wanting to support their adult children.
For Hayley, being Lily’s grandmother brought its own emotional challenges.
She wanted to help in every possible way.
But she also understood that Lily’s parents needed space to make decisions and manage their daughter’s care.
Finding the balance between offering support and becoming too involved was not always easy.
It is a situation many grandparents will recognise.
You want to protect your grandchild.
You want to take away the fear and pain.
But you cannot make the diagnosis disappear.
Sometimes the most important thing you can do is be present, offer practical help and support the decisions made by the child’s parents and medical team.
Living With Sight Loss After an Optic Pathway Glioma
One of the significant long-term effects of Lily’s tumour has been damage to her eyesight.
The optic pathways are responsible for carrying visual information from the eyes to the brain.
When a tumour affects these structures, it can cause visual impairment that may not fully recover even when treatment controls tumour growth.
For Lily, severe visual difficulties became part of everyday life.
This created challenges that extended beyond hospital treatment.
Her family also needed to think about how to support her development, education, confidence and independence.
For a child growing up with visual impairment, practical adjustments and specialist support can be important.
This may involve ophthalmology appointments, visual assessments, suitable learning materials and help with everyday activities.
But Lily’s family were determined that her sight loss would not become the only thing people saw about her.
There was still so much more to Lily than her diagnosis.
Lily’s Life Beyond Her Brain Tumour
When Hayley shared their story in April 2024, Lily was attending school and enjoying a range of activities.
She loved gymnastics.
She also enjoyed playing golf.
These are wonderful details because they remind us that children affected by brain tumours are still children.
They want to play, learn, make friends and discover what they enjoy.
Lily had experienced years of medical treatment and serious visual difficulties.
But she was also developing her interests and enjoying experiences outside hospital.
For Hayley, seeing her granddaughter take part in these activities was particularly meaningful.
After so many years of uncertainty, those everyday moments mattered.
They reflected Lily’s personality, determination and the support of the people around her.
Of course, every child with visual impairment will have different abilities and needs.
But Lily’s experiences demonstrate the importance of helping children participate in activities they enjoy, with appropriate adjustments and support.
How Lily’s Diagnosis Changed Hayley’s Life
Before Lily’s diagnosis, Hayley had a successful, high-profile professional career.
But the experience of watching her granddaughter undergo years of treatment changed her priorities.
She became increasingly involved in fundraising, awareness and charity work.
For Hayley, it was not enough simply to recognise how difficult Lily’s experiences had been.
She wanted to help improve things for other children and families.
Her journey began with supporting fundraising efforts for Great Ormond Street Hospital.
Over time, her involvement expanded into wider brain tumour advocacy.
She became a trustee of The Brain Tumour Charity, bringing her family experiences and professional skills to the organisation.
It was a significant change in direction.
What had begun as one family’s desperate search for answers had become a commitment to helping others affected by brain tumours.
Why Hayley Became Involved in Brain Tumour Advocacy
Hayley had seen firsthand how difficult it could be to get a diagnosis.
She had also experienced the uncertainty of treatment, the effects on the wider family and the importance of specialist support.
These experiences shaped her desire to improve awareness.
She wanted families to have access to reliable information and appropriate medical care.
She also wanted the wider public to understand that childhood brain tumours can have lasting effects even when treatment is completed.
Supporting research, earlier diagnosis and better care became important to her.
Through The Brain Tumour Charity, she was able to contribute to conversations about what patients and families need.
Her experiences gave her a deeply personal understanding of why those conversations matter.
The Importance of Earlier Brain Tumour Diagnosis
One of the strongest messages from Hayley’s interview is the importance of listening when parents and families raise concerns.
Lily’s early symptoms were not the typical image many people have of a child with a brain tumour.
She was not simply complaining of headaches or showing obvious signs of neurological illness.
She was a baby who struggled to feed and gain weight.
She could also appear unusually energetic and happy.
It was only when a specialist noticed the combination of symptoms and unusual eye movements that further investigations revealed the tumour.
Hayley’s experience highlights why awareness matters.
Not every child will experience the same symptoms.
And most feeding difficulties, weight problems or unusual eye movements are not caused by brain tumours.
But persistent, unexplained or worsening symptoms deserve careful medical assessment.
Families who remain concerned should feel able to ask questions and request further review.
Supporting the It’s a No-Brainer Campaign
Hayley also became involved with the It’s a No-Brainer campaign.
The campaign called for greater recognition of brain tumours within national health policy and a coordinated strategy to improve outcomes for people affected by the disease.
For Hayley, the need for change was personal.
She understood how frightening delays in diagnosis could be.
She knew how complicated treatment could become when a child had a rare tumour.
And she had seen the effects of treatment on an entire family.
She wanted to help ensure that people affected by brain tumours were not overlooked.
Her advocacy focused on improving access to care, supporting research and raising awareness of the needs of patients and their families.
Why Brain Tumour Charities Matter to Families
Throughout Lily’s journey, Hayley recognised the importance of charities and community support.
Organisations can help families find reliable medical information, practical advice and people who understand what they are experiencing.
They may also provide financial or emotional support, opportunities for children to enjoy special experiences and funding for medical research.
For a family spending years attending hospital appointments, those services can make an enormous difference.
Charities such as Great Ormond Street Hospital Charity, The Brain Tumour Charity and Make-A-Wish have played important roles in supporting children affected by serious illness.
Hayley’s experiences encouraged her to contribute to that wider community.
She wanted other families to know that support existed and that they did not have to navigate everything alone.
What Is an Optic Pathway Glioma?
An optic pathway glioma is a brain tumour that develops along the nerves and structures responsible for vision.
These include the optic nerves, optic chiasm and other parts of the visual pathway.
Optic pathway gliomas are most commonly diagnosed in children.
Many are low-grade gliomas, meaning they generally grow relatively slowly.
However, even a low-grade tumour can cause serious difficulties because of its location.
Some optic pathway gliomas are associated with neurofibromatosis type 1 (NF1), although not every child with an optic pathway glioma has this condition.
What Are the Symptoms of an Optic Pathway Glioma?
Symptoms depend on the tumour’s exact location and the child’s age.
They may include:
- Reduced vision or difficulty tracking objects
- Unusual eye movements, including nystagmus
- Squint or changes in eye alignment
- Bulging of one or both eyes
- Headaches or other neurological symptoms
- Changes in growth or development
- Hormone-related difficulties
- Poor weight gain in young children, particularly when the hypothalamic region is affected
For Lily, feeding difficulties and weight loss were major early concerns.
The unusual eye movements eventually helped prompt further investigation.
How Are Optic Pathway Gliomas Treated?
Not every optic pathway glioma requires immediate treatment.
Some tumours remain stable and can be monitored through regular MRI scans and eye examinations.
Others require treatment because they are growing, affecting vision or causing additional symptoms.
Treatment may include chemotherapy, targeted therapies in selected cases or other specialist approaches.
Surgery is not always suitable because the tumour can involve structures essential for sight.
The choice of treatment depends on the tumour’s behaviour, location, molecular characteristics and the individual child’s needs.
Lily’s experiences demonstrate why some children require more than one treatment regimen over several years.
What Is Diencephalic Syndrome?
Diencephalic syndrome is a rare condition most commonly seen in infants and very young children.
It can occur when a tumour affects the hypothalamic region of the brain.
One of its most distinctive features is severe failure to gain weight despite continued growth in height.
Other possible features include:
- Marked weight loss or poor weight gain
- Unusually high activity levels
- An unusually cheerful or euphoric appearance
- Feeding difficulties
- Abnormal eye movements
These features do not occur in every child.
The condition requires specialist medical assessment because its symptoms can resemble more common childhood feeding or growth problems.
Lily’s diagnosis of optic pathway glioma and diencephalic syndrome helped explain why she had been experiencing such concerning weight loss while remaining extremely active.
What Lily and Hayley’s Story Teaches Us
Lily was born in November 2016, a healthy-looking baby weighing 9lb 4oz.
But during her first year, she began struggling to feed and gain weight.
Despite repeated medical appointments, the reason for her deteriorating condition remained unclear.
It took further specialist investigations, prompted partly by unusual eye movements, to reveal an optic pathway glioma and diencephalic syndrome.
What followed was approximately four years of chemotherapy, multiple treatment regimens and frightening complications, including severe allergic reactions.
Lily was left with significant visual impairment.
Yet when Hayley shared their story in April 2024, her granddaughter was attending school, enjoying gymnastics and playing golf.
She was finding ways to live her life beyond the diagnosis.
For Hayley, those experiences changed everything.
Watching Lily and her family navigate treatment inspired her to become involved in fundraising, brain tumour awareness and advocacy.
What began as a grandmother’s concern for her granddaughter became a determination to improve the experiences of other families.
Lily’s story is an important reminder that childhood brain tumours do not always begin with the symptoms people expect.
It also highlights how much support families can need long after a diagnosis.
And perhaps most importantly, it reminds us that behind every childhood brain tumour diagnosis is a child who deserves opportunities to learn, play, grow and enjoy life.
Thank you to Hayley Conroy for sharing Lily’s experiences with Aunty M Brain Tumours and for helping raise awareness of optic pathway gliomas, diencephalic syndrome and the challenges faced by families.
This article reflects the family’s experiences as discussed in April 2024. It is not an update on Lily’s current health, treatment or personal circumstances.
Watch Hayley Share Lily’s Optic Pathway Glioma Story
In this episode of the Aunty M Brain Tumours Talk Show, Hayley shares her granddaughter Lily’s journey, from the early warning signs to years of chemotherapy, the long-term effects of treatment and her work raising awareness.
[Insert the original YouTube interview here.]Read More Glioma Brain Tumour Stories
Optic pathway glioma is one of several different types of glioma that can affect children and adults.
Every person’s experience will be different.
Some people are diagnosed following problems with vision. Others experience headaches, seizures or changes in growth and development.
Some tumours are monitored through regular scans, while others need treatment.
Read more personal Glioma Brain Tumour Stories on Aunty M Brain Tumours.
If Your Child Has Recently Been Diagnosed With an Optic Pathway Glioma
If you have found this article because your child or grandchild has been diagnosed with an optic pathway glioma, please know you are not alone.
Receiving a brain tumour diagnosis for a child can be frightening.
You may be trying to understand unfamiliar medical terminology, treatment options and what the future might hold.
Every child’s tumour and treatment journey is different.
Some children need regular MRI scans and eye examinations. Others require chemotherapy or additional treatments.
Some live with sight loss or other lasting effects, while others experience different challenges.
Try not to compare your child’s journey too closely with anyone else’s.
Reading Lily’s story may offer understanding and reassurance, but another child’s outcome does not determine what will happen to yours.
Take things one appointment at a time.
Ask questions, seek specialist advice and remember that parents and grandparents need support, too.
Where to Go After an Optic Pathway Glioma Diagnosis
If your child or grandchild has been diagnosed with an optic pathway glioma, the following organisations may be helpful.
The Brain Tumour Charity
Provides information about childhood brain tumours, treatment and living with the effects of a diagnosis.
It also offers support for parents, families and carers.
Visit The Brain Tumour Charity
Great Ormond Street Hospital and GOSH Charity
Great Ormond Street Hospital provides specialist children’s healthcare, including services for children with brain tumours.
Its charity supports research, equipment, facilities and families.
Visit Great Ormond Street Hospital
HeadSmart — Be Brain Tumour Aware
HeadSmart provides information about possible signs and symptoms of childhood brain tumours.
It aims to help parents, carers and healthcare professionals recognise when symptoms may require further assessment.
RNIB
Provides information, practical advice and support for children and adults experiencing sight loss.
Its services can help families understand visual impairment and access suitable education and everyday living support.
Make-A-Wish UK
Creates special experiences for eligible children living with critical illnesses.
Brainstrust
Offers personalised information, emotional support and practical guidance for people affected by brain tumours.
Brain Tumour Support
Provides emotional and practical support for patients, families and carers affected by brain tumours.
NHS Paediatric Neuro-Oncology, Ophthalmology and Rehabilitation Services
Children diagnosed with optic pathway glioma may require ongoing care from a team involving paediatric neuro-oncology, ophthalmology, endocrinology and other specialists.
Depending on the child’s needs, additional support may include:
- Specialist vision assessments
- Educational support for visual impairment
- Nutritional and growth monitoring
- Endocrinology services for hormone or growth difficulties
- Physiotherapy or occupational therapy
- Psychological support for children, parents and siblings
Ask your child’s specialist team about appropriate referrals and available local support.
Would You Like to Share Your Child’s Brain Tumour Story?
At Aunty M Brain Tumours, I believe every person’s experience deserves to be heard.
Parents and grandparents often have important experiences to share, particularly when a child is too young to explain their own journey.
Whether your child has recently been diagnosed, is undergoing treatment, living with long-term effects or attending regular scans, your family’s experiences could help someone else feel less alone.
Find out how to share your brain tumour story.
Medical disclaimer: This article shares one family’s experiences and general information for awareness and peer support. It is not a substitute for individual medical advice, diagnosis or treatment from a qualified healthcare professional.
Claire Bullimore is an influential figure in the brain tumour community. She embarked on her brain tumour journey and was diagnosed with an intraventricular meningioma. In response to her experiences, Claire founded ‘Aunty M Brain Tumours,’ a platform dedicated to sharing brain tumour stories. Based in London, England, Claire also identifies as a blogger and speaker for Aunty M Brain Tumours, shedding light on the challenges faced by those diagnosed and amplifying their voices for better awareness and support. Through her dedication and advocacy, Claire’s efforts have been recognized by Brain Tumour Research and other organizations, spotlighting her commitment to making a positive difference for individuals impacted by brain tumours.
