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6th Jul, 2022

Solihull family of baby with extremely rare life-limiting condition launches fresh appeal for funds

Felix Nobes 16th Nov, 2018

THE FAMILY of a baby who suffers from a rare life-limiting condition have launched a fresh appeal for donations for their ‘Brave Little Soldiers’ campaign.

They want to raise funds for those suffering from Niemann-Pick Disease type C (NP-C), a debilitating disorder which causes progressive physical and mental deterioration similar to the effects of dementia.

Harvey Charman, aged two, is one of less than 1,000 people known to have the disease across the world.

His family says they want to provide Harvey with a normal life before the disease develops – which could result in his passing.

Problems associated with the illness can include difficulty walking, slurred speech and seizures.

His family announced last week they have already raised more than £20,000 for a charity dedicated to easing the effects of the condition for sufferers.

Niemann Pick UK (NPUK) provides practical advice, emotional support and undertakes research into potential therapies.

Harvey’s aunt Jenny Charman, on a JustGiving page she set up in June last year, said: “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.”

She told us last week: “I have been desperately trying to spread awareness of this horrendous disease since I started fundraising last June and I am constantly searching for donations and arranging fundraising events.”

The Brave Little Soldiers campaign has been continuing its fundraising efforts with a charity 100km bike ride in July and a daring climb up Mount Snowdon in Wales in May.

Parents Jenna Hall and Stephen Charman, who live with Harvey in Shirley, shared a message on the Brave Little Soldiers campaign page, saying: “We would like to start with the words ‘hope’ and ‘belief’ as without these we would be living in a very different and dark place.

“We are hopeful for our son’s future and truly believe there will be a treatment which will allow Harvey and all the other brave little soldiers a chance to show the world how amazing they are.”

Parents and staff from Harvey’s nursery in Shirley, Mereside Farm, held a sponsored walk, crawl and toddle last month on the school grounds and managed to raise £1,000 for Harvey’s cause.

Nursery manager Terri Carter said: “We are so proud of how our families and staff got behind this worthy cause, with Harvey’s family being overwhelmed at the support.”

To donate to the cause go to www.justgiving.com/fundraising/brave-little-soldiers or to learn more about the Brave Little Soldiers campaign visit www.harveyandthebravelittlesoldiers.com/

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