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Eleni Wants Us to Understand a Little More About Her World

Neston Primary School student Eleni is shining a light on Neurofibromatosis, the condition she lives with every day, and in doing so is raising money for a charity close to her heart. 

Neurofibromatosisis 1 (NF1) is a genetic condition that causes tumours to grow along your nerves. It's a condition you're born with, although some symptoms develop gradually over many years. The severity of the condition can vary considerably from person to person. Eleni carries a faulty gene which is what causes the condition but she doesn't let it stop her.

She is the first in her family to have Neurofibromatosis and it has been a journey for them as a family to understand all of the various difficulties that have and will continue to arise in the years to come.

Eleni was passionate to raise money for Nerve Tumours UK, the charity that aims to improve the lives of people with NF. At the start of her fundraising journey, Eleni said: "My name is Eleni, I am nine years old and I have Neurofibromatosis Type 1.

"I would like to help people understand about what NF1 is and how it affects us.

"That's why for twenty days I, along with my mum, auntie and nana, will be walking towards our goal of one million steps.

"Any money raised will help the Neuro Foundation give support and help research this disease. Thank you for your support!

Fundraising has given Eleni the opportunity to come to terms with her condition and to promote acceptance of others. It's an opportunity to inform, turn a negative into a positive, and if it makes one person think twice before passing judgement, that is progress.

Eleni's family set themselves the goal of raising £100 for the charity and smashed it: the total raised to date, including Gift Aid, is £238.75 and counting. Are you in a position to donate today? 

Eleni, her mum, her auntie and nana completed one million steps over the course of three weeks, starting the Friday before Neurofibromatosisis Day on Monday 17 May. May was the month of NF Awareness, so was the perfect time to complete the challenge.

Each weekend Eleni enjoyed long walks with her nan, quality family time spent together and raising money for a good cause. Her mum tells us that she particularly enjoyed walking the Wirral Way down to Parkgate and returning with ice cream from Parkgate's very own famous ice cream shop Nicholls.

There's currently no cure for Neurofibromatosis Type 1. Giving today could improve the life of someone with NF, someone just like beautiful Eleni.

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