Every year at Prosale, staff members nominate different charities and we vote on the charity that we would fund raise throughout the year. This year our technician, Branagh, nominated a charity for a disease which had effected the life of his Fiancée, Gemma.

Niemann Pick has several types, It is a disease that gets inherited when both parents are carriers. It affects the body’s ability to metabolize fat (cholesterol and lipids) within cells. This causes the cells to malfunction, and over time, die. It can affect the brain, nerves, liver, spleen, bone marrow and, in severe cases, lungs.

FUNDRAISING EVENTS SO FAR:

1. Our Installation Manager, Lauren Slender, is attempting run 100K during the month of April.
2. The Prosale team is will be running the Tough Mudder in August.
3. Office Member Kav Townsend is running a 10km winter race.
4. 4. Director Mike Coggins is growing a beard which is being shaved "however he likes" by technician Branagh Townsend on the day of the Christmas party.

Gemma and Benjamin's Story in Gemma's words:

My brother Benjamin, or ‘Benbear’ as he was known by us, had type ‘C’ of this disease. He was a ray of sunshine in our lives but it took several years for his diagnosis of this to be given. It was clear something was not working properly for him, he was adored in school but could not keep up with the other children, his speech would slur especially if he was tired. When the diagnoses was finally found it wasn’t happy news, but it gave our family an answer, and prepared us.

Slowly as he grew up, he became more reliant on a walker and wheelchair as type C progressed. He struggled to say our names or hold his cutlery and his motor skills worsened until he was unable to feed himself. He had surgery to place a gastric feeding tube shortly after that. He picked out his new wheelchair colour grinning as always despite now needing it wherever he would go.

One thing I should mention is that as his older sister, a child at the time myself, I never linked his bodies inability to breakdown fat in his cells with the symptoms we began to see. Me and my siblings were on look out for seizures most morning as he loved to wake up extremely early to watch cartoons. The ‘childhood dementia’ as it is sometimes called where he would forget a question already answered, or what he was he was doing.

I can’t remember the last day I heard him say my name, or even speak for that matter, but the little anecdotes my family had of him quoting his cartoons endlessly, or telling mum how lovely she looked were cherished.

Benbear passed away in 2012 at 11 years old and I cherish my memories of the happy little boy he was.

This is why raising money and awareness for a charity that helps with such a disease is so important, meeting other families and siblings who were experiencing very similar stories, and the support and information given to us to help understand was so greatly appreciated. There isn’t a cure but support with a rare condition, and further research can save other families from being left in the dark.

Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving - they'll never sell them on or send unwanted emails. Once you donate, they'll send your money directly to the charity. So it's the most efficient way to donate - saving time and cutting costs for the charity.