08 October 2021
My son was diagnosed with NF1 during his first year at school.
He is now 14 and doing well. We believe his environment is important to help him deflect further NF1 developments.
When we moved to the UK, I was looking into a support network for those affected with Neurofibromatosis and that is the first time I got in contact with Nerve Tumours UK.
We got in touch with Specialist NF Nurses who were amazing. They helped me and reassured me in the process of setting him up in the care of the children’s hospital in London and more importantly gave me advice on how and when it was the right time to tell my son that he has NF1.
The charity provided very important educational information to support my son at school – teachers understood his special needs better. He is happy at school. A school that understands him and has many friends that support him.
He has many emotional and creative outlets, such as music, martial arts and when he was younger he loved cartoon drawing (that he sold). His cornet teacher and brass band conductor has been strong and encouraging.
Over the years, his doctor’s appointments have become less. From every 6 months, to now every 2 years. We believe his acupuncture has released his anxiety and his awareness of a healthy diet and lifestyle suits him. I think we are creating a happy and healthy environment for him as much as we can and I think he will be fine with all the support he gets, to grow into adulthood.
I decided to celebrate his life by having a DanceAthon ZumbAthon which was held on Friday 22nd October, for Cancer Awareness and raising funds for the following charities Maggie’s, CancerActive and Nerve Tumours UK with a total sum of £920 raised!
The event was supported by Naim Audio equipment from Gareth Clarke, Head of UK Sales. Nuffield Beauty Suite kindly provided amazing raffle prizes from their Elemis product range and a voucher for their treatments. Nuffield donated weekly family membership and monthly family membership, provided the venue & staff for the night as well as social media advertising.
To help raise awareness, the above mentioned charities supplied goodies for the event such as T-shirts, glow sticks, banners, flyers, ICON magazine and pens.
"We wouldn’t have been able to do the event without the amazing team at Nuffield"
The instructors that carried everyone through the event made everything come ALIVE, with a huge sense of joy and an amazing party! They also spread the word and were responsible for raising awareness, receiving donations, reaching out and getting people on the dance floor, and generously giving their time for free as their physical donation to the cause.
Our guest speaker from CancerActive, Larry Brooks, started the dance section of the evening with an informative chat about CancerActive and giving us some examples of people's lives being affected by CancerActive. NerveTumours UK produced online editorial on my story and linked to a giving page that is still open - see below.