Diana Edwards
Indoor rowing 5k a day for a month!
Fundraising for Nerve Tumours UK
Story
Thank you for taking the time to visit my JustGiving page.
Myself and my 3 year old daughter Ellie are suffering with a genetic condition called Neurofibromatosis type 1 or (NF1) for short which causes tumours to grow along the nerves, on the skin and inside the body.
Myself and Ellie have multiple café au lait patches which we thought were birthmarks, we didn't know it could be a sign of anything else until I had a biopsy in November on what was thought to be a birthmark, coming back a neuro fibroma and we finally started getting some answers. It was also around then we noticed a considerable swelling on my daughters wrist and she was referred to have ultrasounds and mri scans and we both had genetic blood tests, it turns out Ellie has a very large plexiform tumour in her left arm which are considered the worse type as they have higher percentage of turning sinister her tumour is from her elbow going down the forearm and branching off into her hand, Which she will be having a complex surgery to remove it and she also a slight heart murmur.
I am going to be doing a rowing event, I will be doing 5k a day for a month on the rowing machine totalling 150 kilometres. And finishing it off with a mile walk with Ellie.
As yet there is no known prevention or cure for Neurofibromatosis, but the Nerve Tumours UK charity provides first class support, information and advice for those who suffer with the disease. They also facilitate and promote innovative research and acts as an advocate for those with NF.
As yet there is no known prevention or cure for Neurofibromatosis, but the Nerve Tumours UK charity provides first class support, information and advice for those who suffer with the disease. They also facilitate and promote innovative research and acts as an advocate for those with NF.
I'm supporting Nerve Tumours UK because their mission means a great deal to me. They provide crucial support to people living with the Neurofibromatoses- the conditons that cause nerve tumours.They are dominant genetic conditions, which means that they can be passed on in families from one generation to the next through genetic inheritance. Similarly, about half of nerve tumours cases recorded have no previous family history of the condition. In other words, it can occur totally “out of the blue”.Please help me bolster their support.
Donating through JustGiving is simple, fast and totally secure. Once you donate, they'll send the money directly to the charity so it's the out efficient way to donate. I am raising funds for Nerve Tumours UK that only run on donations and they invest research into NF1 and support families with NF1 sufferers.