Sarah’s NF1 story & Langmead fundraising

I am Mum to Hannah, 9 and Jake 7.  I work full-time on Finance systems projects for a food business and my husband is a soft-tissue therapist and fitness trainer.

Hannah was first diagnosed at 2 ½ years old when the paediatrician we see annually for her allergies flagged that 3 café au lait spots on her torso may be NF1 and so referred her for genetic testing.  When it was confirmed, we as parents were tested but found to be clear, so we then knew this was a new genetic event in Hannah.

At that time, the impact to Hannah and us wasn’t so disruptive from a health perspective but more just a worrying and anxious time due to the uncertainty and what little we knew of how NF1 may affect her health in future.  Like all parents, you want your child to be accepted and it scared us to think that changes from NF1 may be met with hostility or negativity as she grew up.

Little changes occurred with NF1 for the next 18 months until 2 days before she was due to start school sadly she suffered an incident which led to her left leg, tibia bone breaking.  It took months before she was out of the casts, what the doctors put down to NF1 and eventually in March they were discharging us but instinctively I knew things were not right.  She still had a lump at the site of the break and wasn’t comfortable on her feet; she would often come in from school, take her shoes off and go straight on the floor to play. 

With my concerns the doctors referred us to St George’s to the orthopaedic surgeons for their advice and expertise.  After this, I trawled the internet for information about breaking bones and NF1 and there I saw it, issues with non-healing of bones known as Pseudarthrosis, the tibia being a common issue.  As soon as we saw the consultant in London from x-ray and examination they knew the NF1 had affected the bone and she was suffering from Pseudarthrosis.  All this time we thought her leg had been recovering but it hadn’t, it needed intervention. 

Hannah underwent an operation to insert a telescopic rod into the bone to support it as well as bone grafting from her hip bone placed at the site to encourage healing.  It gave some short-term success but she had two other operations over the course of the next year to make adjustments.  She has now had 3 years with no operations but unfortunately the bone continues not to play ball and the last 3 months her physical activity has become more and more limited.  We are about to look at a different approach with the doctors at the RNOH in NW London and hope that she can get back to doing more of what she loves soon.

Hannah’s character was the inspiration….. firstly Hannah’s favourite colour is blue and taking the blue shine-a-light theme and the association with the NT charity logo and colours, I planned a blue theme.  For a small donation we would wear blue on the day, and have a baking competition with a blue theme.  We also adorned the office with blue balloons and decorations; one of my colleagues found blue sweets to dot around too.

Langmead Herbs is based in a beautiful part of the world on the south coast, and not being local, I really appreciated the wonderful location and so was keen to do some outdoor fundraising, taking in the beautiful surroundings.

I also persuaded my manager, the Finance Director (with a little hesitation), to participate in all three events so we could boost the fundraising by asking for sponsorship of him completing all three, the complete Triboatathon!

I shared plans for the day with Hannah’s story and was overwhelmed by the signup and how donations began to flood in; we had over £400 raised in the week leading up to the day before we had even started!

We had people across the group’s companies taking part and there was a huge buzz of excitement in the office.  We had to make some adjustments on the day since it was the week of very hot weather, so I was buying bottles of water and writing risk assessments and making sure we were doing everything in the safest possible way.  I wanted it to be enjoyable, but it was important to do it right.

Most surprisingly the day was an impromptu team building event, everyone got involved, the atmosphere was incredible, one staff member even said it was the best day they had experienced since working there!

My colleague kindly put together a fantastic photo collage, which I think sums up the day beautifully and we have a great reminder of a brilliant day both for Nerve Tumours fundraising and for my teams and colleagues getting to know each other better.