27 August 2019
by Melanie Saavedra, Emilio’s Mum
We had never heard of NF1 as Emilio is the only person in the family who has this condition, so absolutely everything was new and very frightening at that time. We wanted to be informed and found what was The Neuro Foundation (today called Nerve Tumours UK) via the Internet and this gave us a place to go to for help and guidance. The early days were very dark and scary but finding the charity helped us with our questions and having the helpline is a lifeline to us. It is hard as a parent to deal with the new “normal” when your child has NF.
Emilio, who is 10, is a very happy little boy but sadly deals with daily pain from his NF, extreme fatigue and itchy skin. This is tough for him as he wants to just get on with things but sometimes, he needs rest days and sleep. As a parent this is hard to watch knowing that there is very little you can do to change this – we live in hope that one day a cure will be found.
You read everything you can and if you see a glimmer of hope or a new development, this lifts you up.
Emilio's Parents, Melanie and Jose
The community spirit where we lived was amazing, and some of the Mums from school wanted to show their support. They organised a “fun day” to raise money and awareness of NF. The day was a huge success and we raised a great deal for Nerve Tumours UK. During this day I mentioned to a friend that I would love to host a Charity Ball as us Mums need a night out every once in a while! I didn’t think much more of it until my friend asked if I was going to get planning and actually host it. So, the “ball” was born and five years on we have hosted five charity balls, and they are now the “must go to” event in the local calendar.
In the five years, we have hosted 1,148 guests! This massive figure is the result of a whole community coming together for Emilio and NF. From running the London Marathon to cycling the Prudential Ride100, local runs, head shaves, bake sales and so much more, NF has really touched the lives and hearts of everyone that surrounds us. For this I will always be truly grateful and just shows the power of positivity and turning something so negative around. I know this doesn’t change Emilio’s diagnosis, but it has changed my outlook for Emilio as he loves attending the ball, wearing his tux and singing a song. I am so proud of who he is and how he deals with his condition that it is impossible not to be swept away in his world!
I would say to other parents of newly-diagnosed children to reach out to Nerve Tumours UK, call the helpline and speak to the team – they know their stuff. Join the Facebook page and talk to other parents. I find great comfort in talking to another Mum or Dad and hearing a parent view, talking about a little trait that you maybe haven’t seen in your other children or something that has just cropped up. I don’t feel alone anymore as I have this wider extended NF family that understands me.
Life changed for us as a family of five in a heartbeat and yes, I would do absolutely anything for Emilio not to have NF but as I can’t change this, we decided to embrace it. We live for today and take the rough with the smooth, the good and great days with the not so good ones, but we always smile and remain positive. Emilio’s smile rarely falters, so if he can smile and bring happiness, then so can we.
" I find great comfort in talking to another Mum or Dad and hearing a parent view, talking about a little trait that you maybe haven’t seen in your other children or something that has just cropped up. I don’t feel alone anymore as I have this wider extended NF family that understands me."