I would like to share mine and my son's NF1 story.

My name is Briony, and I would like to share mine and my son’s NF1 story.

I was born with NF1 and was fully diagnosed when I was 6 months old. NF runs on my dad’s side of the family. Sadly, my dad passed away 24 years ago. I was born with café-au-lait patches, and over time the fibromas began to grow. I can remember noticing them from around the age of 7. As I got older, more appeared, especially during my pregnancies with both of my children. I am now 38 years old and still notice the odd new one appearing from time to time.

I have two children, Thomas and Kai. Out of the two of them, only Kai, who is now 11 years old, has NF1. I first noticed signs when Kai was around 9 months old, and he was officially diagnosed at about 2 years old.

At the time, I didn’t know much about NF because I was fostered when I was younger and didn’t have much information about the condition. As Kai has grown older, he has had numerous MRI scans and many hospital appointments. When he was first diagnosed, the hospital thought he may have had a brain tumour, but over time regular MRI scans showed that it wasn’t. It was actually a bright spot on his brain linked to NF1.

Kai has had a very challenging time over the years. He struggles with appointments and medical procedures, which eventually led to him being diagnosed with ADHD. We both find things difficult at times, especially with the uncertainty surrounding NF1. When Kai asks questions, it can be hard to know how to answer them.

At the moment, Kai is affected by café-au-lait patches, the bright spot on his brain — which has grown over the last two years — and a kink in his optic nerve.

Kai starts secondary school in September, and he is understandably very nervous about moving to a much bigger school. He has already said that he thinks he will find things difficult, but I hope with the right support and understanding he will settle in and do well.

We first heard about the charity after Kai was diagnosed. We regularly see one of the NF nurses at Ryegate Children’s Centre. Clare, who supports Kai with his NF and ADHD, has been amazing with him. He has built a very close bond with her.

She always answers any questions KaiI or I may have, whether during appointments or over email. Clare really goes out of her way to help us, not just individually but as a family as well. She signposts us to different places for support and is always there, even if it’s just for a quick email update about Kai.

The work she does for the charity goes such a long way, and people like Clare are truly amazing and down to earth.

I am Kai’s full-time carer, and I also care for my eldest son, Thomas, who has recently been diagnosed with a cyst on his brain, hearing loss in his left ear, and is currently awaiting an ASD diagnosis.

As a family, we enjoy going away together, bowling, and having film nights in front of the TV. Both of my children love theme parks and the fastest roller coasters they can find, although they will never get me on one because I’m scared of heights!

We are a family of three who are neurodiverse. We always overcome every obstacle that comes our way.

I would especially like to show my appreciation to Clare Dhillon for all the help and support she has given us, not just as a family but for Kai as well. One moment that really stood out was when Kai came into an appointment with his Pokémon cards — Clare immediately got on his level and engaged with him. No matter how difficult appointments can get, she always takes the time to make him feel comfortable and understood.