A family has set a target of raising £100,000 to help fund research for Neurofibromatosis (NF1) - a condition that currently gets very little funding in the UK.
Six-year-old Jessica Woods, from Penwortham, has been under the expertise of Royal Manchester Children’s Hospital since her diagnosis aged 15 months and she has just been given the go ahead to begin a new trial drug. This drug has come through research in America.
The condition causes numerous challenges for her including using a gastrostomy tube due to her narrowed airways, managing daily nerve pain, reflux and tiredness.
Her mum, Krista, says the condition affects one in three thousand and is as common as Cystic Fibrosis, but is not widely heard of.
She now aims to raise more awareness, as well as funds to help future trials that will benefit her daughter and many others with the condition.
Read related stories: What is neurofibromatosis type 1 (NF1)?
The 37-year-old says: “We knew things were not right when Jessica was a baby but it took a while to diagnose.
“But with hindsight we can see many indicative signs were there, including cafe au lait spots common to NF1.
“At nine months she was not able to wean onto solid food and due to regular choking episodes and inability to eat, she was given a high calorie milk, which she had until her gastrostomy tube was fitted.
“She would find it very difficult to sleep as she would wake up every 15 minutes coughing as she could not catch her breath or the reflux was burning her oesophagus.
“I had to sit her up with her most nights to support her in a position which minimised her reflux and kept her airways open.
“It was a real struggle initially, especially as we were so sleep deprived.
“Now Jessica is doing great and manages all aspects of her condition very well, but it takes a lot more effort for her to do anything because her muscle tone is lower. She requires regular rests and support at school, especially with feeding”.
“We travel to Manchester Children’s Hospital frequently for Jessica’s appointments. She has regular check ups with numerous specialists and MRI scans every three months. Her airways are significantly narrowed due to her condition so we are hopeful that the new drug from America will be a success in reducing the tumour size.
“The trial is run at Royal Manchester Children’s Hospital. Jessica has the most beautiful and caring heart. She always thinks about her older brother Harrison, eight, and younger sister, Amaya, three.”
Krista and her partner Gary, 42, are now planning ideas to help raise their target of £100,000 for Royal Manchester Children’s Hospital’s research into NF1 and would welcome any support for their campaign.
So far they have raised over £3,000 through generous donations from family and friends and a Scentsy Party at Lime Bar, in Penwortham.
Jessica’s teaching assistant from St Teresa’s Catholic Primary School, Samantha Sumner, and a number of friends and family, will be taking part in the Pilling 10K on September 29.
Krista is inviting anyone else interested in entering the sponsored event to get in touch via Facebook page NF1 Army.
To donate visit http://www.justgiving.com/crowdfunding/krista-bradley