The challenge...

On the 7th July our fantastic friend Matt 'Fletch' Fletcher has challenged himself to The Fan Dance to raise money for Huxley. We are immensely grateful for the huge effort this is going to take to complete, supported, obviously, by Louise and the kids :)

THE FAN DANCE LEGEND

The Fan Dance is a gruelling 24km SAS Selection test march staged over Pen y Fan, the highest mountain in the Brecon Beacons. The infamous march is the world’s oldest Special Forces test and is used as the first major indicator of whether a candidate has the physical and mental aptitude to complete the legendary selection course whilst carrying a weighted Bergen of 52lbs (that's the weight of Rellie!!) plus his water for the whole challenge.

The route is an absolute lung buster that throws everything at you and can also be a real battle against the elements. There are steady slopes that allow a solid jogging pace, shocking inclines that have you almost on your hands and knees, loose stone tracks that require cautious foot placements, stream crossings and a forested off-road vehicle track that allows for some rapid going. Even SAS & SBS candidates at the height of their physical abilities regard beating the clock in this military time trial as a serious challenge, and all know its capacity to hurt. Aside from the race aspect of this life changing event, just getting to the end is an accomplishment and something to be immensely proud of.

Our story...so far...

On August 22nd our beautiful boy Huxley was born into our little family of mum: Laura, brother: Miller, and Dad: me, Deano. Miller had waited all summer for his little brother to arrive excited for all the things we were going to do as 3 become 4.

3 weeks after he was born Laura, a nurse, an ITU Sister from Queen Elizabeth hospital, who specialized in 'liver' patients, was concerned that Huxley still had jaundice and his stools were not as they should be. A visit to Birmingham Children's Hospital for a check up soon escalated to Huxley being admitted to ward 8 (liver ward) as it suddenly became a hard reality that Huxley had Biliary Atresia - a rare liver disease that is fatal if not treated within 3 months. At just 4 weeks old Huxley went into surgery for the Kasai procedure to try and fix the problem.

Whilst the procedure did save his life initially, it was only a temporary fix as it became clear after weekly blood tests and regular visits to the hospital that his liver was still failing. The only option left was a full liver transplant. Shortly after his 1st birthday we were put on the emergency transplant list and on October 27th Huxley received the liver of a kind and generous 30 year old donor who sadly lost her life but had the foresight to be a registered donor. The amazing surgeons, nurses and staff at the Birmingham Children's Hospital did an amazing job as we lived at the hospital for 4 weeks to be near him day and night. It was, without doubt, the worst time of our lives and I would not wish the experience on any parent or family.

Looking back now I see just how turbulent our lives were then. Laura had obviously not returned to work after her maternity leave and I, after 10 years of running my events and marketing company, had closed the company I had worked so hard to build and took a job at a local charity (UK Sepsis Trust) as I couldn't be away from home so much. Miller was the hero of the family, the glue that held us together when we were so close to breaking, the best eldest son we could have ever hoped for, the best big brother for our Huxley.

Huxley is now 6 months post-transplant and whilst he is doing well, laughing and smiling between the meds and blood tests and hospital visits, we have already had one horrendous rejection experience that was thankfully averted and the future is still uncertain as we live day to day. Huxley is immunosuppressed so is prone to infection (which is a major cause for rejection) so we have to very careful where we go, who we see and he can't go to nursery or most of the regular places babies go. Laura hasn't returned to work as being a nurse/mother at home is more than enough for one person (supermum) and Miller has sacrificed so much, albeit very honorably, as we now have limited options in what we do as a family.

Where the money raised will go...

As we continue on this journey we want to make the most out of life with our boys. There will always be the possibility of rejection leading to another transplant, or a myriad of other complications that we have to constantly be prepared for. This fund will go towards giving Huxley a life he can really enjoy and we are immensely grateful to Matt and his family for dedicating so much time and effort for Huxley and wish him all the best in his challenge!