Diana’s One Month of Rowing for Neurofibromatosis
27 August 2021
Hi, I am Diana. Both my 3-year-old daughter Ellie and I have a genetic condition called Neurofibromatosis Type 1 or (NF Type 1) for short. The condition causes tumours to grow along the nerves, on the skin and inside the body. Ellie & I both have multiple café au lait patches, which up till now we thought were birthmarks. We didn’t know that they could be a sign of anything else until I went for a biopsy in November. It turns out that one of my birthmarks was actually a neurofibroma – finally, we are starting to get some answers. It was also around the same time that we noticed a considerable swelling on my daughter’s wrist. She was referred to have an ultrasound and MRI scans, and we both had genetic blood tests.
That's when we found out that Ellie has a very large plexiform tumour in her left arm. These are considered to be the worst type as they have a higher percentage of turning sinister.
.png)
Her tumour is from her elbow, going down her forearm and branching off into her hand. She will be receiving complex surgery to try and remove the tumour. On top of this, we found out she also has a slight heart murmur.
I recently found out that my mum may have had Neurofibromatosis Type 1. She sadly passed away due to a brain tumour and lung cancer when I was 13. I also found out that 2 of my 4 sisters have NF Type 1, but I was unaware of this until November last year. It was then that I found out that if you have NF Type 1 and have children there is a 50/50 chance of each child inheriting the condition.
I have a fibroma tumour on my hip which I had covered with a tattoo after being told it was a birthmark when I was younger. I am also getting surgery to remove this as well as a lump in my leg.
Whilst we wait for our surgeries and as I cannot do anything to physically help her, I wanted to do something to raise money and awareness.
Ellie is an amazing, caring little girl, and with all that she has had to go through, with hospital visits, scans, etc. She is still her kind, happy and caring self.

I have decided to take on a rowing challenge. I will be completing 5k per day for a whole month (from 09.08-09.09), rowing a total of 150 kilometres on the rowing machine. Finishing with a 1 mile walk with Ellie.

Diana has completed 10 days of rowing 5km per day

50km rowed so far!

Ellie

Into week three!

Row, Row, Row...

1 month and 150km of rowing done

Diana & Ellie

Precious family time

– Diana"My daughter has NF1, so I'm raising money and awareness of Neurofibromatosis for Nerve Tumours UK to do vital research because as of yet there is no prevention or cure."
Filter News

World At Her Feet
Christina has wrtiten a blog partly about living with NF1 and partly about her travels. Find it here:
Read More
Arooj: The Fashion Blogger with NF
Arooj Aftab, 22, is an influencer, with NF1, who is known for her baggy fashion style
Read More
Nerve Tumours UK wins Movement for Good award
Find out more about the award and why we received it here:
Read More
Dayna’s Story
Despite suffering many set backs as a result of NF, Dayna still maintains all her ambitions in life. Read her story here:
Read More
Prudential Ride 2019
Thank you so much to all our Prudential Ride 2019 riders! Find out more, including some fantastic photos, here:
Read More
Expertise in Neurofibromatosis: Within Europe
Find out more about the spread of NF experts across Europe:
Read More
New Gene Therapy at a World-Renowned Research Insitute
Find out more about the new gener therapy that both NTUK and NF2 Biosolutions are strongly supporting
Read More
Deacons Marina’s fun filled fundraiser for NTUK
Find out more about the successful and well received fundraising event here:
Read More