29 April 2021
My 9-year-old daughter, Poppy, has recently been diagnosed with NF1. It has turned our world upside down and has been quite a lot to take in. NTUK has been such a supportive tool for us as a family. The nurses are on hand to offer advice and support.
One of the most daunting things about the diagnosis is that almost every person I have spoken to, including some medical professionals, have not heard of NF1. Speaking to someone and being part of the community group and listening to specialists who are involved in research and who know exactly what NF1 is has been a real support.
I work in a primary school and in Liverpool, we have quite a high number of SEND children across the city. It really struck me that after being in education for almost 20 years that I, or a lot of my colleagues, have not heard of this condition, which is more common than cystic fibrosis for example! Because of this, we have managed to get copies of the 'Friends' book into schools in the North Liverpool Learning Network. My aim is to raise awareness. Awareness to parents, especially of SEND children as NF1 is linked so closely to learning difficulties, awareness to children and awareness to staff. For a long time, I believed that my daughter had lots of birthmarks. I had no idea that cafe au lait marks looked like birthmarks.
Now that we have the diagnosis it explains so much. Our daughter has trouble with balance, fine and gross motor skills, and memory. We now understand why. She is an amazing little girl who is the kindest and caring soul. She puts others before herself and lives her life to the full. She has many friends and she does not let her NF hold her back. She loves to sing, swim, climb and enjoys the many adventures we go on as a family. She amazes me every day and I know she will use her condition to teach others how to embrace their differences and stand tall.
World Neurofibromatosis Awareness Day - 5K Colour Challenge
Poppy really wants to raise awareness and even though she is too young to join us in the colour run obstacle dash, she will be there cheering us on. The teachers in the school are really eager to support charity events and we have 19 participants so far. Together we can raise awareness and offer the support that is needed to our NF community.