Graham Hiom

Louis Hiom - Raising funds for NeST

Fundraising for NesT
£8,135
raised of £8,000 target
by 81 supporters
Donations cannot currently be made to this page
Event: Graham Hiom's fundraising
Graham Hiom's fundraising, 15 January 2011
NesT

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RCN 1107601

Story

Graham, his eldest son Jake and his niece Tory, are all entering their first triathlon.

In addition, Graham is attempting to successfully swim the English Channel as part of 3 person relay. Why....

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…

Very quickly they told us that they thought 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 beome damaged with all the implications associated with that.

Thankfully, Louis responded to the heavy dose of steroids prescribed and after a week in hospital, was well enough to come home. 

NS is a condition where neither the cause has been fully identified and has no known cure.  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 and being in remission.

Louis has completed the first round of steroids and is currently protein clear.  

In the main, Louis is in good spirits.  Clearly strong steroids come with side affects.  A ranging hunger, weight gain, a 'moon' face and temper tantrums (or is it the terrible two's?).  The steroids are an immune suppressant, so he is prone to picking up other viruses doing the rounds and isn't very good at fighting them once he is ill.

That's why i'm trying to raise funds and every penny raised will go to NeST.

The fun starts on the 15th May, as I enter my first ever triathlon.  Although only a Mini, as well as the swim (which should be ok), it is immediately followed by a 20k bike ride and a 5k run.  About 2 hours on continuous exercise.

The big one is a 3 person relay channel crossing. With my fantastic colleagues, Sarah and Tonia, we anticipate it will take between 14-16 hours. Taking it in turns to swim 1 and a half hours we swim across in a strict order. If one fails, we all fail. We are booked on a slot to go at the end of June, the exact day being dependent on the weather and tides. 

There is a good chance that Louis will struggle with the condition for the next 8-9 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.

About the charity

NesT

Verified by JustGiving

RCN 1107601
Nephrotic Syndrome (NS) affects approx 10,000 people in the UK, majority are children, with no known cause or cure. The current treatment is non-specific and highly toxic, with many potentially life-threatening complications. NeST funds Bristol Children's Hospital in researching NS to find a cure.

Donation summary

Total raised
£8,135.00
+ £609.01 Gift Aid
Online donations
£2,935.00
Offline donations
£5,200.00

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