As many of our friends and family know our beautiful Jessica has a condition called NF1 (or it’s full fancy term Neurofibromatosis Type1)

Neurofibromatosis affects 1 in 3,000 people worldwide which equates to over 2.5million people. It affects everyone differently and is challenging to predict and currently has no cure.

NF1 causes tumours to grow on the nerves anywhere in the body and Jessica is currently on a trial treatment for one of these tumours called a plexiform which grows on the inside of her neck resulting in narrowed airways, a gastrostomy tube and other challenges.

People affected by NF1 also often have daily difficulties that others may not initially see such as chronic nerve pain, low muscle tone, hyper mobility, learning difficulties, sensory sensitivities, difficulty sleeping. Jessica is affected by all of these and I have by no means exhausted the list for both Jessica and others.

Jessica works harder than most and uses more energy than most to simply get through the day.

We have a mission that if we too can use the extra energy and determination Jessica uses then we can contribute to changing the future of NF1. Just a few years ago the potentially life changing drug that Jessica received wasn’t available to our little girl so with more funding who knows what else might be around the corner.

Our initial target is £100,000 🙈 This will all be donated to fund further research into treatment and management for NF1 at Manchester Childrens Hospital.