Penwortham girl who has NF1 is holding a family fun day to raise funds for research into her genetic condition
A young girl with an often unheard of condition that affects her muscle tone is making great improvements, thanks to a new drug trial.
Seven-year-old Jessica Woods has Neurofibromatosis (NF1) - a genetic condition that is characterised generally by multiple café au lait (light brown) skin spots, low muscle tone, nerve pain and hypermobility and non-cancerous tumours that grow off the nerves.
Under the guidance of Royal Manchester Children’s Hospital, Jessica has been taking a new trial drug.
Her condition causes numerous challenges for her including using a gastrostomy tube due to her narrowed airways, daily nerve pain, reflux and tiredness.
Her mum, Krista Bradley of Penwortham, says: “Jessica has been doing well. She has had her ups and downs and had to have a break from the trial for a while following side affects but she is back on it now.
“She started the new drug last October but she has had to come off it a few times. She took a long term break in January as it affected her skin and she developed an infection in her toes.
“As a result, she was housebound and she had to be home-schooled for a while.
“Despite this, Jessica has been brilliant and has been in high spirits.
“But doctors have adjusted the dosage and she is back on it and so far, so good.
“It has slightly shrunk the tumour on her neck and we hope that will continue.
“She still has blood checks every week and MRI scans every three months at the hospital.”
Over the past year, Jessica’s family has been fund-raising for more research into NF1 at Royal Manchester Children’s Hospital and have set a target of £100,000.
They have already raised more than £8,360 following donations from family and friends; friend Jackie Gee completing The Manchester Simplyhealth half marathon; book sales; auctions; an event at Lime Bar, in Penwortham and a team taking part in the Pilling 10K last September.
And now, spearheaded by brave Jessica, there will be a family fun day at The Rene Sladen Centre for Guiding, Chesmere Drive, Penwortham, on Sunday, September 8, from noon until 4pm.
Krista adds: “Jessica is really excited about fund-raising as she enjoys it. She was on her way to the hospital one day and asked when we were doing another fund-raiser. She said she wanted something where lots of people could come, so we organised the fun day.
“What started off as a really small idea has grown. We have had so much support from family and friends and have been doing really well, raising more than £8,300.
“We took a break from fund-raising while Jessica was recovering from her infection so it is nice to be back on it.
“It is such a nice feeling to be fund-raising and it brings everyone together. We want to give something back as the staff and doctors at Royal Manchester Children’s Hospital are amazing and they are really pleased with what we are doing.
“It is a great hospital and the lead centre in the north for NF1 so we really want to help them develop research into NF1.
“We have also met a lot of people with NF1 along the way which has been great.”
Everyone is welcome to attend the family fun day, which kicks off at noon, with a visit from the Mayor of South Ribble, Harry Hancock.
There will be a bouncy castle, live music, donkey rides, Play Your Cards Right, a climbing wall, raffles, stalls, a barbecue, and crafts.
If anyone wants to donate visit www.justgiving.com/crowdfunding/nf1army or visit NF1 Army on Facebook.