A seven-year-old girl from Penwortham is raising awareness of the life-changing condition she was diagnosed with at the age of one.Advertisement
Jessica Woods has a condition called Neurofibromatosis Type 1 (NF1). The symptoms of the condition vary from person to person, but for Jessica it means she has hypermobility, low muscle tone and nerve pain. A tumour in her neck impacts her ability to swallow, meaning Jessica has a gastrostomy tube, and she gets tired very easily.
Despite all these challenges, Jessica is determined to make a difference to how NF1 is understood and treated.
Over the past 12 months Jessica has helped family and friends to organise various fundraising events.
The next event is a family fun day taking place on Sunday 8 September from 12pm to 4pm at The Rene Sladen Centre for Guiding in Chesmere Drive, Penwortham. There will be activities, games, food and drink, plus stalls and entertainment, and the Mayor of Penwortham will be there to open the event. To find out more, visit the Facebook event page.
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Jessica’s mum, Krista Bradley, said: “Jessica is amazing, she inspires us to do what we do. She’s happy, creative, positive, and not afraid to be herself.
“The family fun day was Jessica’s suggestion. She really enjoys the fundraising we do, and loves being involved in the planning. She just gets on with it.
“The fundraising has also brought a really nice feeling to the family including Jessica’s siblings, Harrison, 9, and Amaya, 4. It’s a positive thing for all of us, finding fun things to do with her condition rather than it all just being about going to hospital.”
As well as raising money, Krista wants to increase understanding of NF1. She believes there is a lack of awareness because of how much symptoms can vary.
She said: “We’d never heard of NF1 when Jessica was diagnosed at the age of one.
“Since then we’ve realised it’s a condition that doesn’t get the attention or funding it deserves. Because Jessica is affected we are passionate about making a difference for her and for others.
“All the money we raise will be given directly to research into NF1 at Royal Manchester Children’s Hospital. It’s a lead centre for NF1 and their support has been amazing.
“We’ve set a total fundraising target of £100,000. It’s ambitious and I don’t know how long it’ll take but we’re determined to get there.
“I felt like somebody needed to decide that this condition needs more attention and make the difference. One day I decided to stop thinking about it and get started.
“In the future hopefully there will be better understanding, management and treatment of NF1, and we want to play a positive part in that happening.”
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To donate to Jessica’s fundraising, visit the NF1 Army JustGiving page. For updates on the campaign, follow on Facebook.
Have you heard of NF1 before? What do you think about Jessica’s fundraising efforts? Let us know in the comments below.