Welcome to the launch of our new project. Parent Connect is where parents of kids with Nf can find a listening ear from other parents who have been (or are still going) down the same path and experiencing the same hopes, fears and frustrations.
A new diagnosis can leave parents feeling isolated and bewildered. It’s likely no one you know has heard of Neurofibromatosis and that makes it even harder to share your concerns.
Parent Connect offers the chance to speak with another parent who understands how you are feeling.
All our listeners are volunteers with years of experience of dealing with Nf and all it brings to a family.
We know picking up the phone can be a big step, but speaking to someone who understands really can make a difference.
All calls are confidential.
Meet the Parent Connect Volunteers
Jauhara
My name is Jauhara, and I am a mother to Anaya, who lives with Neurofibromatosis type 1 (NF1), and a partner to her father, who is also affected by the condition.
Through both roles, I have gained a deep and personal understanding of the complexities and challenges associated with NF1.
In 2021, Anaya was diagnosed with an optic nerve glioma following an MRI and subsequently underwent 20 months of chemotherapy. I am pleased to share that her tumours are currently stable.
During the latter stages of her treatment, her father also underwent radiotherapy and chemotherapy for a brain tumour, presenting an additional challenge for our family during an already demanding time.
Living with NF1 has brought significant emotional and practical challenges. However, with the support of dedicated oncology teams, Tumour Support Scotland, as well as the strength of our family and friends, we have been able to navigate these experiences together.
These experiences have given me a strong appreciation of the importance of compassionate support, clear communication, and shared understanding. I am committed to supporting others affected by NF1 by offering a safe, empathetic, and non-judgemental space, with the aim of helping families feel less isolated and more empowered throughout their journey.
Lorna
Hello, I’m Lorna, and I live in Grangemouth with my family. My middle son, Jon-Paul, was diagnosed with Neurofibromatosis Type 1 (NF1) shortly before his third birthday, following the identification of multiple café-au-lait spots and characteristic freckling. Prior to this, he had already been identified as having developmental delays, which became more evident over time.
Throughout his education, Jon-Paul has benefited from additional support. He attended nursery and primary school with the assistance of a Support for Learning Assistant, and later progressed to our local high school, where he spent six years in the Autism Unit. He has since continued his journey into further education and is currently completing his third year at college, studying mechanics. This summer, he will begin a placement at a local hospital supporting adults with learning difficulties, gaining valuable work experience across various departments.
During his early teenage years, Jon-Paul was also diagnosed with ADHD and autism. With appropriate support and medication, he has been better able to manage his studies and daily life. His NF1 is currently considered mild, with no major complications. He does have a plexiform fibroma affecting his ankle and tibial nerve, which can sometimes cause discomfort, but he has chosen not to pursue surgery at this time.
Outside of his studies, Jon-Paul is actively involved in disability football, which he greatly enjoys and finds incredibly rewarding.
As a parent, my experiences have given me valuable insight into navigating diagnoses, education systems, and support pathways. I am passionate about sharing this knowledge and offering support to other families facing similar journeys. I am always happy to connect and provide guidance where I can.
Jill
I am a mother of three adult sons, with lived experience supporting a child diagnosed with neurofibromatosis type 1 (NF1) from early childhood. Like many families, we had no prior awareness of NF1 before my son’s diagnosis at 18 months old, and our journey since has been both complex and deeply educational.
Over the years, we have navigated a range of medical and developmental challenges, including an optic glioma diagnosed in early childhood and, more recently, the ongoing monitoring of a brain mass identified during the COVID period. These experiences have given me a firsthand understanding of the uncertainty and emotional impact that can accompany long-term health conditions.
As a family, we have also experienced the wider effects of NF1, including supporting siblings and managing additional needs such as ADHD during adolescence. Through it all, resilience, adaptability, and informed decision-making have been central to our journey.
I am incredibly proud that my son now lives independently, works as cabin crew, and leads a full and active life, travelling the world.
Alongside my personal experience, I am passionate about supporting other parents and families affected by NF1. I recognise the importance of feeling heard, understood, and supported, and I aim to provide a compassionate, empathetic, and non-judgemental space where others can share their experiences and find reassurance that they are not alone.