The NeST Builders are ALL the extended family that have helped, supported and prayed for him over the last five years. The swimmers that will take it in turn to swim for 1 hour in cold and choppy open water until we get to France are dad Graham, big sister Caity, Auntie Debbie, cousins Tory and Oli and Caity's partner Cal (and one of Louis' best friends!)   Some of us are fairly experienced open water swimmers. Some are definitely not.  We think it will take us between 14 and 18 hours!

This will be a real challenge to get the team across.

Why are we doing it:


On Saturday the 13th November 2010 our little Louis woke up with a very swollen face.

A trip to the Doctors concluded they thought he had a virus but to get a wee sample just to be on the safe side.

30 mins after providing the sample , we were rushing Louis into Hospital.

We found out he was suffering from a rare kidney disorder called Nephrotic Syndrome.

Please read the charity site for more info but in short, NS is a condition where his own immune system had started to attack his kidneys. The kidneys begin to leak blood and proteins into his wee which causes the body to start to retain water. Untreated, the kidneys will become damaged with all the implications associated with that.

No one knows what causes it for sure (lots of theories!) and there is no cure (yet!) NS is 'managed'  We check his wee every
day. Weeing in a potty is the first task Louis knows he has to do each morning. Checking it is the first thing we do to see if that day is ok.

Management is a regular dose of steroids, the size of which vary depending on how he is doing,  The steroids suppress Louis' immune system making him vulnerable to other challenges. Long term use of steroids also comes with some heavy downstream impacts.

However this management plan is designed to try and avoid any permanent damage occurring to the kidneys.

Overall, Louis is doing great.  Growing up to be a bright and beautiful boy. Sometimes his body is coping... other times not so much. Late 2014 through to Spring 2015 was a tough time as the management plan struggled. An 8 week course of low dose chemotherapy in April / May 2015 gave his body a reboot and he is now back in control.

Thankfully, most little ones grow out of it but it usually takes several years whereby the person goes through a cycle of the kidneys being attacked, responding to a dose of steroids / other treatments and being in remission.

That's why The Nest Builders  is trying to raise funds and every penny raised will go to NeST. The money goes straight to the research team in Bristol Uni trying to find the cure.

There is a good chance that Louis will struggle with the condition for the next 5-6 years so this is truly a cause whereby monies donated could very well help find a breakthrough and directly impact Louis and the other 10,000 people currently suffering in the UK.

Thanks for reading.