12 May 2021
When Christian was born, I noticed something on his head but was told it was just from being born and will go away when the skull hardens. As he got older the lump on the back of his head grew larger. I pushed for a second opinion on his 6-week check-up. We went for Scans, MRI scans, blood tests and eventually got the diagnosis. Up until this time we hadn’t heard of NF1 and found it very overwhelming with everything that comes with or associated with NF1.
When we found out about Christian, me and Christians Dad had to get checked to see if we were carriers of the NF1 gene. The results came back negative which means Christian is the first in the family to have it (well of what we know). Our lives have changed a lot since the Diagnosis with regular hospital appointments and check-ups, yearly MRI’s which has been moved up to twice a year due to the tumour behind his right eye which appeared last year. He is currently having eye tests with a specialist every 3 months, the tumour has grown slightly as if it carries on, he may need Chemo to control the tumour. Which is a lot to take in as a parent.
Christian is a very sociable child and is enjoying nursery and making friends, so socially I do not think it has affected him. His cafe au lait marks are getting bigger as he grows and are on his neck and face along with all over his body. Smaller ones are gathered around his armpits and groin area. As a parent, it does worry us on how this May affect him as he gets older and how he feels about his Café Au Lait marks. The NF doctors and specialists Christian is under are amazing and so helpful, they keep us up to date with any changes and we can’t fault them on the care they provide Christian.
After Christian's diagnosis, I found some groups on social media and found Nerve Tumours UK, which gave us more information about NF. We have done some fundraising for Nerve Tumours UK before and raised a substantial amount. This year we have already beaten our previous efforts and would like to try and raise even more!