Ralph’s NF1 Story
08 June 2026
Ralph is 3 years old and was diagnosed with NF1 at around 7 months old. At the age of 2, doctors identified optic pathway gliomas (OPGs) affecting both of his eyes, with his left eye being the most severely impacted.
In February 2025, Ralph began chemotherapy treatment with carboplatin and vincristine in the hope of preserving his vision. Before treatment started, Ralph underwent an operation to have a port-a-cath fitted, a small device inserted under the skin in his chest which provides direct access to a vein for chemotherapy, blood tests and medications. To use it, nurses insert a needle through the skin into the port each time, which Ralph has found particularly difficult.
After two cycles of treatment, it became clear that Ralph’s body was struggling with the full dose of carboplatin.
He frequently became neutropenic, required blood transfusions, and was often admitted to hospital with temperatures and infections.
His chemotherapy dose was reduced to 75%, which his body tolerated much better.
Throughout his journey, Ralph has undergone quarterly eye examinations and MRI scans, all requiring a general anaesthetic, alongside daily eye patching to help strengthen his vision.
He has also had weekly blood tests, which he absolutely hates, as they require access to his port-a-cath each time. Despite being so young, Ralph has shown incredible bravery through every procedure, appointment and hospital stay.
As a family, this journey has been incredibly challenging. Ralph has an older brother and balancing the needs of both children alongside hospital appointments, admissions, school runs and everyday activities has been difficult at times.
To reduce the risk of illness during chemotherapy, we have had to limit Ralph’s contact with others and keep him away from many normal childhood activities.
Any temperature during treatment means following a strict hospital protocol, where Ralph must be admitted immediately and receive sepsis antibiotics for at least 48 hours while doctors monitor him closely.
Despite everything, Ralph has responded incredibly well to treatment. His vision in his left eye has improved significantly, with his visual acuity improving from 1.0 to 0.2.
We are so proud of how resilient and strong he has been throughout this entire journey.
Ralph is expected to complete his chemotherapy journey in June, with his port removal hopefully taking place in August.
He will continue to have eye tests and MRI scans every four months to closely monitor the tumours and ensure there are no further effects on his vision.
As a family, we are so excited for chemotherapy to come to an end and for Ralph to begin pre-school and enjoy being a normal 3 year old boy,
making friends, playing and experiencing all the little moments of childhood that treatment has made so difficult.
At the same time, we are understandably very nervous about the future. We know that OPGs can recur and affect Ralph’s eyesight again, so life after treatment very much feels like a 'watch and wait' journey. While we remain hopeful, the ongoing monitoring and uncertainty are something we continue to live with every day.
Ralph's mum Rachael organised a non-uniform day at his school for World NF Awareness Day
and raised a huge amount thanks to the generosity of parents, friends, and family
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