Cycling for William, James and Brodie

On 15 September, my eldest (12yo) son and I have decided to attempt the London to Brighton bike ride (c120km) to raise money for 3 amazing charities and families very close to our hearts. Finn has never cycled any distance before so we've strapped our bikes to the car this summer and will be training at every opportunity.

The first charity is Beyond Batten Disease - the Iron Will Fund. One of my incredible former pupils, William Feif (8yo), has been diagnosed with a very rare, terminal, neurodegenerative condition called CLN3 Batten disease. He is rapidly losing his sight and we were told that this will be followed by mobility loss, cognition loss, dementia-like symptoms, and reduced quality of life and lifespan. There is currently no cure for Batten disease, and raising funds for this charity represents the best hope to drive the research and development of new medical interventions, including gene editing technologies, to eventually eradicate this horrible disease. I have been William's swim teacher for the past 3 years and I can honestly say that he is the most courageous, amazing little boy who has taken all this in his stride. It is heartbreaking to think about the inevitable future.

The next is for an amazing family and very close friend of ours, James Hanfrey who was away with us, and apparently well, in Frankfurt for our sons’ rugby tour just over 2 months ago. When we returned home, James was suddenly admitted to hospital with intense headaches. After a number of investigations the family found out that James has stage 4 glioblastoma, a rare and aggressive form of brain cancer. Despite undergoing surgery to remove most of the visible tumour, we received the devastating news that his condition is terminal, with an average life expectancy of only 1-2 years.

However, there is hope. Through extensive research and consultations with top Oncology and Neurology experts, the family have identified promising medical treatments that could potentially extend James's life by 3-4 years. These treatments have shown remarkable success in trials and have given families like theirs a chance for more precious time together. The challenge is that the treatment is expensive and not yet covered by insurance.

And finally, last July 2023, my amazing rugby league mate Todd and his wife Kat were dealt the devastating news that their beautiful son Brodie (2 years old) suffers from Spinal Muscular Atrophy (SMA) Type 2.

SMA is a genetic neuromuscular disorder caused by a mutation in the SMN1 gene and the leading cause of infant death. This gene codes for the main protein needed for the motor neurons of the spinal cord to survive. Without it there is a lost connection between the brain and the skeletal muscles, which leads to degradation of the muscles. Simply put, Brodie will likely not walk unaided as he will lose mobility in his limbs over time. We are raising funds to support this wonderful family with additional physio sessions, future wheelchairs and adaptation to their home to make life easier for Brodie.

It certainly puts everything into perspective when close friends are suddenly fighting for their and their loved ones' lives. We know that all three families would be so incredibly grateful for any much-needed additional funds we can raise together.

Thank you for any £€$ you can spare to show your support and help our friends whilst Finn and I shed much sweat (hopefully not blood and tears) in their honour.

Barnesy and Finn