FOR MOST three year olds Christmas is all about being covered in glitter, helping decorating the tree and ripping open presents.
And that will be no different for Harvey Charman.
However he won’t be running to his pile of presents Father Christmas has left him on Christmas morning.
The three year old, who lives in Solihull Lodge, suffers from Niemann-pick Type C, which is known as childhood dementia, a rare and fatal disease which has left him unable to walk or talk and relying on a feeding tube to get the nutrients he needs.
This cruel disease stops his – and other children like Harvey – body from breaking down fats in the cells around vital organs such as the brain and liver.
These fats build up causing irreversible damage and causes symptoms similar to those that suffer with dementia.
Following Harvey’s diagnosis in 2017 the Jenny set up ‘Harvey and the brave little soldiers’ to raise funds for Niemann-Pick UK which supports families like Harvey’s and funds research into treatments.
This year as well as making Christmas special for Harvey his aunt Jenny Charman and mum Jenna Hall are determined to give a financial boost to NPUK which has seen donations fall and fundraising events cancelled over 2020.
Harvey, with a little help from his mum and aunt, will be running Harvey’s 12 Days of Christmas raffle.
From December 1 to 12 Harvey will pick a winning raffle ticket for prizes including a holiday in Wales, an Amazon voucher and a Christmas cake.
Jenny said: “Everybody has heard of dementia, knows how cruel and difficult it can be, watching the person you love deteriorate in front of your eyes.
“Now imagine this in the body of a child who has not yet had the chance to experience life. This disease is cruel, unforgiving and relentless.
“Harvey hasn’t developed like others his age and the future for him is uncertain.
“But one smile or giggle from this gorgeous little boy and you are hooked.
“Just being around him makes you happy, if he can smile and laugh at the world around him- so can we.”
Over the last few years Jenny and Jenna have held numerous events and completed many sponsored challenges in order to raise funds for NPUK.
But for them it is not just about raising money, Niemann-Pick is such a rare condition that any awareness about this horrendous disease we can spread will and can only help.
Jenny added: “This story also involves hope.
“Hope none of us could have imagined we would be feeling when we were given Harvey’s diagnosis three years ago.
“What we realised was that our family was not alone and despite being rare, others have gone through similar experiences.
“What also gave us hope was that via the charity we found out research was taking place, partly funded by NPUK and advances were being made in treatments.”
Tickets are on sale until Monday, November 30 and cost £1 each. To enter text 12 DOC with your name and number of entries to 07854118344 and payment details will be sent.
For more visit www.harveyandthebravelittlesoldiers.com
