In May 2017, the 4 Non Blondes cycled 250 km from London to Amsterdam and raised over £8,500 for PID UK. This is their story told by Helen Smith who is one of the 4 Non Blonde team.
The 4 Non Blondes are formed
A couple of weeks into January 2017, 3 friends and myself had it confirmed that we were able to sign up and cycle from London to Amsterdam. And so the 4 Non Blondes were formed.
It had been in the pipeline for a while, but with logistics getting in the way it took a little while to get the time away from work authorised for us all. We have all cycled shorter journeys previously for other charities, but this we wanted to do to help raise awareness of PID UK, to help raise awareness of what Lily and Herbie Taylor who have a primary immunodeficiency (PID), live with on a daily basis.
About Lily and Herbie provided our inspiration
Lily and Herbie have the PID known as NEMO. Their PID journey began a year after Herbie was born when he seemed to get one illness after another. Following on from a rocky 3 weeks in a Paediatric High Dependency Unit and a meningitis episode, an infectious disease consultant suggested Herbie have an immune deficiency.
Over a couple of years Herbie underwent various tests and finally received he diagnosis of NEMO, a rare X linked immune deficiency. Herbie’s parents were told that he may in the future need a bone marrow transplant (BMT) but at the age of four he started immunoglobulin replacement therapy.
With their family settled down with Herbie’s treatment and condition, Lily was soon struggling to gain weight and breathe properly. A diagnosis of severe lung disease was made, an extreme rarity in a ten year old. Having told the hospital of Herbie’s condition investigations were conducted and it turned out Lily also had the NEMO mutation too and something had triggered Lily’s good X chromosome to switch off allowing the one that carried the mutation to switch on.
Lily is still having immunoglobulin therapy and Herbie has now had his BMT and continues to have immunoglobulin at home. Doctors at both the John Radcliffe in Oxford and Great Ormond Street Hospital monitor Lily and Herbie and the family are optimistic for the future.
Our challenge
Training was slow and always in the dark, as we ventured out before others awoke mostly at around 5.45am or after 8pm after our own families were settled for the evening.
Time has flown by and on Thursday 11 May 2017 we ventured into London ready to meet the team and begin our journey on Friday morning. Mixed emotions for us all……little sleep and nervous anticipation wondering if we would be able to complete the challenge.
We set off on Friday at 7am and began the 80-mile journey from London to Harwich. A few unexpected hills, a badly timed puncture and no sign of the expected rain and thunder storms predicted. In fact when we arrived at Harwich the sun was shining and we were all grateful for a warm shower and dinner.
Day 2 saw cycle paths through the rolling dunes towards the city of Amsterdam. What an experience to have the right of way over all vehicles other than trams and no sign of a pothole for 60 miles. A few hold your breath moments, which could have ended in disaster, but thankfully we all survived unscathed.
We did it!
The weather for the last 20 miles into Amsterdam was, shall we say slightly wet. Very heavy rain! However, as we approached the finish line the rain stopped and the sun began to shine. It was an emotional moment for us all, especially seeing small children and families of some of our fellow riders there to greet them with banners of congratulations.
We did it, fastest ladies to finish and riding at an average speed of 17mph isn’t bad for an old bunch of girls.
To date we have raised a massive £8497.05 and there are still some additional pennies to add to this amount before we finalise the total. This has come from sponsorship, coffee mornings, fizz and film evenings, donations from local companies and also from the schools that both Lily and Herbie attend where a non uniform day and superhero day was held. We are truly grateful and humbled by the support we have received.
Thank you from the 4 Non Blondes
If you want to read more of the Taylor family’s journey with NEMO you can visit their blog at https://immunedeficientboy.wordpress.co
Posted June 2017
