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Tim’s Story: Living With Neurofibromatosis – it’s a family thing

13 September 2021

I count myself as lucky. With support and assistance, things have turned out okay since my diagnosis with Neurofibromatosis as a three-year-old. It has been a winding road for all the family, it was never just me who was affected; here is our story.

I was three when I was diagnosed with Neurofibromatosis, a spontaneous mutation. At the time the Mutant Hero Turtles were big, so I took solace in having something in common with my favourite cartoon characters. However, having “something wrong with you”, was not easy, and I distinctly remember a particularly obnoxious child physically moving away from me and asking if they “could catch it” when they found out. Obnoxious may be harsh, perhaps ill-informed is a kinder explanation.

I count myself as one of the lucky ones; I was largely shielded from the vitriol of the school gates and my mum and dad being questioned about “what is wrong with your child?” (yes, an actual question!) Throughout school, I had the support of a loving and supportive family as well as most teachers who pushed, challenged and drove for change that ultimately benefited me.

"As a family, we always knew that we had the Neurofibromatosis Association (as was, Nerve Tumours UK now) in our corner. The support from this wonderful organisation (via Jo the family support worker for the South West) allowed my amazing family to help me implement learning strategies, and my schools the infrastructure to help me reach my full potential."

– Tim

With the blanket of support around me, I learned to learn in the way I could, given my specific learning issues; a fantastic resource was ‘LD does NOT mean Learning Dumd!’ A book written by Miss Maniet’s Class and Friends.  Most importantly I did not become defined by a genetic condition, to the extent that any impact was largely non-existent.  Yes, I had days when my short-term memory was not great, or my reading a bit slower (I would forget what was read at the top of the page). But as I got older and understood what type of ‘learner’ I was, putting those strategies into place became second nature and my confidence improved. I remember one teacher and a separate educational professional looking me in the eye and saying, “You’ll be lucky to get an average GCSE”.  I smirked inside and thought, “I’ll show you” (or words to that effect). But without support, I would not have had this confidence.

The impact of NF does not just rest with the individual, a whole family can be affected, and again with the support of Nerve Tumours UK, as a family, we knew what to expect and how to get help if we needed it. It may have been how to handle those difficult school gate situations, or signposting teachers to support resources.  I distinctly remember one hospital appointment and my sister being upset and anxious. The school knew our family background and allowed her the day off so that we could attend the appointment as a family, and everyone could be supported.  The early years were tough. On many occasions, my parents were told “You know more about NF than I do” when seeing GPs.  Nerve Tumours UK provided a wealth of information to allow my parents to become real experts.  Thankfully now, our condition is better understood.

Nerve Tumours UK has always been there, a kind of crutch; their support to my parents and encouragement to me was incredibly important. The signposting and resources to find learning strategies was so important and allowed me to progress not only academically but in so many other ways. The summer camps I attended as a child were not only grounding but also a source of inspiration and opportunity to chat freely with people in the same boat… I even keep in touch with one friend I made at the camp now!

Now, I am a fully-grown adult, minus a couple of fibromas. I’m a proud uncle to nieces and nephews, looking forward to getting married to my beautiful fiancée who understands me (and tolerates my ‘short term memory issues’). I am in a job I love, am a godfather and achieved “that average GCSE” along with a degree and Masters. I enjoy supporting AFC Bournemouth, going for a walk, cooking, reading, and seeing family and friends. Life has always been as normal as it could have been, and we met challenges together, thanks to my family and Nerve Tumours UK.

I never felt alone in overcoming obstacles, but I also recognise that I was privileged in having access to Nerve Tumours UK and parents who knew how to ‘fight the system’. It upsets and saddens me that not everyone will have access to this level of support and that is why this amazing charity needs our help. Surely everyone deserves the same life chances as my family and I.

Keep fighting, don’t give up… support is there for the whole family.

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