12 May 2021
Tate has recently been diagnosed with NF1. As it is such a recent diagnosis, we are yet to find out if this is something he has inherited. We know that should he have inherited the condition, it will mean that our other children will have to be tested too, however, neither myself nor Tate’s father has any obvious symptoms.
Tate became poorly during the first lockdown, whilst we were shielding, as Tate’s younger sister has a different condition and was on the clinically extremely vulnerable list. Not all the causes for the original problems he had have been diagnosed yet, but he has had multiple issues identified alongside Neurofibromatosis.
Ironically, NF was not the reason he was first hospitalised, but when he was being examined, the neurologist discovered multiple cafe au lait spots (which I naively thought were birthmarks and hadn’t realised were coming up rapidly on his body) and thus began the road to diagnosis.
Tate does not suffer from any issues which impact his learning, however, does sometimes find big emotions difficult to deal with. Something which, we now know, could well be linked to his condition.
Luckily, his school has been amazing and have offered Tate constant support during his diagnosis and are in regular contact for updates and to check in with us as a family, which we really appreciate. They also sought support from the school resources team at Nerve Tumours UK and found the information pack very useful and informative. I had passed on the link to the school after coming across the site. The information on the website is not at all scary (unlike on some websites) and it was really reassuring to read stories of families in a similar position to us.
We are still a long way from knowing the full picture with Tate or knowing just how much his life will be affected by Neurofibromatosis, but what we do know is that Nerve Tumours UK has already become such a vital source of information and support for us.
Tate is very proactive in finding positives in difficult situations and when he heard about this year’s NTUK Shine a Light Marathon, he immediately wanted to take part to help other people in a similar position to him.
We all joined in as a family, walking alongside him supporting him as he went. We completed the 26.5 miles across the three-day bank holiday weekend at the end of World NF Month. Fortunately, the sun came out for the entire walk, making it much more enjoyable to walk along the seaside, rewarding our hard work with well-deserved ice creams! Tate was so happy when we completed the challenge, it’s a great achievement and we’re so proud of him.