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.
Now I have decided to celebrate his life by having a DanceAthon. If you live in the Newbury Berkshire area you can participate and join in the celebrations on Friday evening 22nd October 2021 starting at 7pm.