Jenny Charman

Harvey and the Brave Little Soldiers

Fundraising for Niemann-Pick UK
£48,477
raised of £50,000 target
by 270 supporters
Niemann-Pick UK

Verified by JustGiving

RCN 1144406
We support people living with Niemann-Pick to improve & enhance their quality of life

Story

Hello and welcome to our page.

We now have a team justgiving page. Please see for our overall fundraising amount raised for NPUK so far:

https://www.justgiving.com/companyteams/brave-little-soldiers-team

It is dedicated to all the brave little soldiers who are battling with Niemann-Pick Disease type C (NP-C) and the families that support them. 

We are now also on facebook. For information on upcoming events and to keep in touch please see us at 'Harvey and the Brave Little Soldiers'.

https://www.facebook.com/bravelittlesoldiersnpuk/

Please also see our website. On it you will find out more about Harvey, Niemann-pick and will see photos of our fundraising journey :)

www.harveyandthebravelittlesoldiers.com

This page has been set up to raise awareness and much needed funds for Niemann-Pick UK (NPUK). This charity recently came to my attention after a very special person close to my heart was diagnosed with NP-C. 
This is a small charity (with less than 500 members) whose work is entirely funded by donations and successful grant applications.They provide much needed practical and emotional support, advice/information and facilitate research into potential therapies.
 

Niemann-Pick Disease type C (NP-C) is a very rare, neurodegenerative disease caused by an accumulation of lipids (fats) in the liver, spleen and brain. 
At present there are currently less than 100 patients in the UK and only around 500 cases known worldwide.
A child with NP-C
 will often experience quick and progressive mental and physical deterioration over the course of several years — similar to Alzheimer’s disease, hence its nickname of “childhood Alzheimer’s.” Like Alzheimer’s, Niemann-Pick disease type C has no cure and typically leads to death. Though each case is individual and can present very differently. This is what makes this particular disease so difficult to spot and diagnose.

This is where the reason for this page comes in....  

Meet Harvey- our own brave little soldier.

This amazing little boy came into our lives in December 2016. Harvey is my nephew, he is a son, a grandson and a great grandson but most importantly he is just Harvey; a little boy who loves music, giggles uncontrollably at being tickled and is loved unconditionally by not only his family, but by anybody who meets him. Sadly, he has already faced health issues since birth but is growing stronger and developing every day and the whole family couldn't be prouder of him. This page is dedicated to him. To raising money for a charity focused entirely on helping children like him and families like ours.

I will be regularly updating this page with various fundraising events which myself, my family and friends will be taking part in, running or organising. Together we can make a difference and hopefully help find a cure for this horrible disease.

Thank you for taking the time to read this page.

Jenny xx

About the charity

Niemann-Pick UK

Verified by JustGiving

RCN 1144406
NPUK is dedicated to making a positive difference to the lives of people affected by Niemann-Pick diseases and their families. Our vision is a world where those affected can meaningfully participate in society, reach their full potential and achieve the best possible quality of life.

Donation summary

Total raised
£48,476.56
+ £1,884.73 Gift Aid
Online donations
£18,030.01
Offline donations
£30,446.55

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