Our gorgeous daughter Lola was diagnosed with NF1 in 2015 and we've been on a learning curve ever since. NF1 affects children and adults in many different ways and what we have learnt to accept is that there is no written rule with this one! For Lola this heavily impacts her learning and speech and has recently been diagnosed with ADHD. Her sight is also impacted and she has had several MRI's to ensure there are no nasty tumours lurking behind her eyes!!!!
No matter what she faces she ALWAYS has a smile on her face and truly embraces life.
We have received so much support from our NF1 specialist nurse Ruth who has been amazing, helping us to understand how we can help, teach and support Lola. Ruth has also helped educate school, enabling them to provide Lola with the education opportunity that every child should have.
We have raised around £15,000 over the past few years and I'm hoping we can really smash it in 2019!!!! #endnf 💙💚💙
Thanks for taking the time to visit my JustGiving page.
I'm supporting Nerve Tumours UK because their mission means a great deal to me. They provide crucial support to people living with the Neurofibromatoses- the conditons that cause nerve tumours.They are dominant genetic conditions, which means that they can be passed on in families from one generation to the next through genetic inheritance. Similarly, about half of nerve tumours cases recorded have no previous family history of the condition. In other words, it can occur totally “out of the blue”.Please help me bolster their support.