On their way they are trying to bring about awareness of 4 great charities. Saint Francis Hospice, Cancer Fighting Fund, Sands and Childhood Tumour Trust.
David Burr are proud to be supporting them on their journey.
World Neurofibromatosis Awareness Day
17th May 2022 marks World Neurofibromatosis Awareness Day.
Neurofibromatoses is the umbrella term for a group of genetic conditions (Neurofibromatosis Type 1 (NF1), Neurofibromatosis Type 2 (NF2) and Schwannomatosis) translates to mean “Nerve Tumour Increase”. The condition causes tumours to grow on nerve endings.
It is a fairly rare genetic condition which is incurable.
Adams son, Callum 6 years old, has been undergoing the lengthy diagnosis process since Feb 2021. They first noticed a large amount of, what we thought were birth marks, they are actually called, Café Au Lait marks or CAL’s.
- Complications of this condition can also include:
- Tumours to grow along nervous system, on optic nerves and inside the body
- Bone deformities
- Sight problems including blindness
- Social skill difficulties including (ASD, ADD, ADHD and dyspraxia)
The condition will require constant monitoring, testing and management for the rest of his life.
The childhood Tumour Trust has already provided so much support to help them understand the condition, what to expect and how to manage life with NF1. With the help of CTT they have provided Callum with a toy called “Patches” the giraffe, that he can take with him to his hospital appointments and a children’s book about NF1 with the main character Patches.
The Childhood Tumour Trust is a growing charity whose aim is to bring children, young people and their families affected by Neurofibromatosis type 1 (NF1) together, (be it virtually at the moment), provide online parental support, campaign for better care & earlier diagnosis and to liaise with schools over special educational support.
To find out more of the great work the Childhood Tumour Trust does then please view their website at: childhoodtumourtrust.org.uk
We hope that you take the time to like, share and donate to the 4 Peaks 4 Reasons challenge and help families like ours to raise awareness and show of support around NF1
Facebook: facebook.com/4peaks4reasons
JustGiving justgiving.com/fundraising/4peaks4reasons
